I'm 33 and have the same exact symptoms. My PCP is unsure what I have due to my young age. I do have two autoimmune disorders (DMT1, and Myasthenia Gravis). Both have been ruled out. I'm very interested in knowing why I am in so much pain. This story has touched me to look into more help.
3
This Gentleman’s symptoms are similar to mine Avascular Necrosis. I was diagnosed and as a result have had two hip replacements. Please review this diagnosis. May God bring healing to your body.
1
I had similar symptoms, and after months of testing, discovered it was histoplasmosis, from breathing in a fungus. The spores settled in my lungs and then became blood-borne, causing aching muscles and joints. I hope this patient is all back to normal! Mine eventually resolved itself on its own after several months. He should do a follow up chest x-ray to confirm that it is completely gone from his lungs.
1
I have recently been going through the same issue. I have originally been diagnosed by a rheumatologist with PMR and something is not adding up. I started with inflammation in my elbow that was diagnosed as cubital tunnel syndrome. Then went into a lung infection or maybe my asthma was out of control. Then I all of a sudden struggled to do any of my PT exercises due to pain, stiffness and weakness in my hips. I then realized I was going in and out of fevers up to 101.2. This spread to my shoulders and hands and in three weeks I was totally disabled. I could not sit up from laying position, get to my feet, walk or do anything because the severe pain and stiffness in all those joints would not allow me. It seems classic PMR because of my age, but everything is not adding up. It took over 40 mg of prednisone and days before I would start feeling any relief. Then when we dropped to 30 to try to taper the prednisone I went back into total disabling symptoms in hours after the larger dose wore off. When we tried a second taper a week later I got the same result. I am finally working through a third taper and I am suffering daily in pain with it. I still have low grade fevers daily. None of my blood work adds up to anything as my WBC and neutrophils are jacked up. Some blood work points to certain autoimmune disease and there are no symptoms for that disease or they point to another but other tests do not. Rheumatology is like a huge puzzle. I hope you get relief soon!
I have had similar pain like this but in my spine as well. Also insane migraines and I get blood clots really bad...I have had 2 strokes, a PE, MI, and over a dozen DVTs. When I wake up the only way I can describle it is what i would imagine waking up on fire feels like. Tonnes of tests...no one can figure it out and its been 10 years....it has gotten to the point that I can no longer eat, or keep food down....not sure if its bc of the pain...but once I get to a point where I need a feeding tube I have contacted the people at Dying with Dignity bc if I refuse the feeding tube I can qualify for Assisted Suicide bc if this doesn't get figured out I can't live like this. Its like having 10/10 pain almost on a constant basis. I've lost 70lbs in 6 months and now that I can't keep food down, I am losing 2 to 4lbs per week. I just want to get better so if anyone on here can help me or has any ideas....I have a 5 year old son...all I want in the world is to get better so I can be the momma my little boy deserves.
OMG. I cannot believe that I missed this article when it first came out. A friend just forwarded to me. Over the last three weeks I had the same symptoms and lived on aleve, which did not help. Then a friend spoke with her sister who had suffered from PMR several years ago. I never heard of it. The beginning of this week I saw my doctor who listened to me, took blood, and put me on prednisone. The relief was almost immediate and I'm seeing a rheumatologist this coming Monday. Talk about "rue the day!" I rue the day I missed reading the NYTimes!
8
Psychology is a science. In the beginnings of science three guys were getting together and they shared the frustration that they couldn't study the meta-physical. They decided to study those things of the physical world. They never said that the meta-physical wasn't real; science was only to be a form of study. Science intentionally chose to ignore what is considered to be a large portion of reality. Imagine choosing to ignore anything with the color blue. Imagine how your reality would change.
Then, there were influential events that greatly affected the base knowledge of humanity. These events created distortions in how humanity perceives reality. Science generalizes its understandings across the entire field of scientific studies to include psychology. Newtonian Physics made certain statements that disconnected one living being from other living beings. Then Rene Descartes "I think therefor I am" which pushed human beings into their heads AND emotions took an immediate back seat. Science chose to ignore the metaphysical which God would fall under, this is why it is a mistake for religion and science to get into an argument that God does or does not exist.
Now, we are going in the direction of Quantum Physics connecting everything and the works of Antonio Damasio PhD forwarded "I feel therefor I am".
Most people's reality, their foundation, is based on previous distortions.
The problem for humanity is that Science has been "made" to be the measurement of reality.
4
I was diagnosed with pmr ,I was on vacation when it hit me pain in my legs so bad I could hardly walk ,I had to move out my house could not get up the steps,I have a wonderful dr who knew what it was immediately was my Ced rate was 87 ,immediately he put me on prednisone and 2000 ml CBd drops
The CBd drops were like a miracle.they helped with pain, I know now what triggers it .if I have any gluten.or sugar..on day I had a crunchy chocolate bar The next day on the ground in Pain. Once I stick to being gluten free now 3 ml prednisone and my drops I am fine .
@Kathy. I was wondering a few years ago my bones use too hurt they said it was arthritis,I wonder i it was the first sings of pmr also my urine was strong smell .i seams to me that CBd oil cured a few things.
I was diagnosed with PMR about 8 years ago. It was almost Thanksgiving, I woke up one morning w/ hip and shoulder pain. I thought I had over did it getting my home ready for guests and the holiday meal. I took some Aleve and nothing helped. I thought my hips ached due to my flat feet. I had previously been diagnosed with knee problems due to fat feet. Physical therapy and orthotics took care of that problem. A family friend who is a neurologist told me to see my primary doctor and not my ortho guy. My doctor looked at my blood results and immediately suspected PMR. I took the prednisone and voila! No pain. I felt as if someone had laid their hands on me and healed me. Round of prednisone and tapering and my PMR ended. My doctor figured I had PMR about 20 years earlier same symptoms, I didn't take prednisone that time.i was given strong anti inflammatory drugs. Eventually, the pain went away. I was in my thirties at the time. Coincidentally, previous to both of the flare ups I had strep throat. A few years later after the last flare up I developed a bad cough. Allergies? Nope. My allergist, after x rays and tests sent me to a pulmonary specialist. After pulmonary tests and an attempted biopsy I was given a bronchoscopy. Good news,bad news. I did not have cancer. My doctors did not know what I had. I had a granuloma. After 3 years of CT scans the granuloma was still there. I am healthy at 62 years. My pulmonologist calls me his "lucky girl". All 3 doctors thought I had cancer.
2
The patient's reluctance to tell his doctor how serious was is something I've seen often. It's left to the wife to be the truth teller. It's as if she's tattling on him. Or maybe he's just shut down from the pain.
People not being open with their doctor is problematic and fairly common. Or they drop their bombshell at the end of the visit. Give your doctor the information he or she needs right at the beginning of the session. This might have helped him get through this weeks sooner.
7
Ah, the human body- inflammation somewhere, pain everywhere. Recently I had a deep dental infection caused by a root canal gone bad. The osteoarthritis in my hands and knees when nuts. But, see, my doctor told me that a dental infection COULD NOT be causing my joints to hurt. I politely turned down his request for expensive blood tests and scans. The dentist yanked the tooth, and guess what- I stopped hurting. All t hose years in medical school learning algorithms, but unfortunately, not much common sense....
19
"It was a fungus, though the lab still wasn’t sure which one... Spores from both fungi can be inhaled."
I have been suffering from symptoms for a number of years which have defied diagnosis by some of the top doctors in New York.
I had been living in a condominium that had mold that tested positive for two hazardous strains of mold at the time that
I became ill and was forced to live with that hazardous mold for a number of years as my former condo board refused to address the leaking that was causing the mold, and the mold could not be remediated while there was active leaking.
Having read this week's "Diagnosis" I am wondering if it is possible that there could be mold lodged inside me, which is making me ill, and if so, how I would pursue this.
I am hoping that this could be the missing link that doctors have been unable to find.
How am I to find someone who can diagnose me ?
I would be very appreciative if anyone has a suggestion for me.
Thank you
DJS
11
Waking one morning in extreme pain in my shoulders and hips in 2013, I then visited my General Practitioner, who ordered various blood tests. As a result of the tests I was referred to a rheumatologist within a week, who upon reviewing blood tests and my symptoms diagnosed me with PMR.
He prescribed a high dose of prednisone which was gradually tapered off over a two- year period.
I had monthly blood tests before visiting the rheumatologist each month during the two- year period.
The extreme pain gradually abated and I became more mobile. I had to retire early from the workforce.
I am very grateful to live in Australia which has a government-funded universal health care scheme called Medicare.
This meant that my medical costs during this period were minimal and usually covered fully by Medicare. This reduced a stressful situation enormously.
I then developed Chronic Fatigue Syndrome/ Fibromyalgia, which I still have. However, that is a whole other story, as indicators and treatment options are not as clear-cut as PMR.
It’s all a learning process for Doctors and patients.
9
@JenJen -- It's good that the learning process isn't mediated by financial worries or insurance companies that have their own idea of what treatment one should receive based on costs or policy terms. We're lucky to live where we do.
6
I am a practicing rheumatologist at a major academic medical center here in the US, and I disagree with the management and "diagnosis" presented here.
The patient likely has an inflammatory arthritis such as rheumatoid arthritis (RA). PMR does not affect the wrist or hands, and should not have been considered as a diagnosis in the first place. As part of the workup of the RA, the patient was found incidentally to have lung nodules, prompting a likely unnecessary surgery to diagnosis presumably latent fungemia. I suspect that his RA went into remission from his steroids, and will likely come back. While many things can cause RA to flare or go into remission, the "connection" presented here between the removal of a few fungal nodules and the RA is shaky at best.
10
@Mark, but what about this description of symptoms: “By the time he went back to his doctor a few days later, every muscle, every ligament, every bone in his body seemed to ache.”? RA affects the joints only, no? I can see how the muscles might feel weaker in an RA flare up, but not why both muscles and bones would be painful.
I have osteoarthritis in my hand and I can feel that the pain is centered in my joints, even though the entire hand is stiff and weak.
4
@Mark I think the removal of the nodes was used for diagnosis, then anti- fungal attacked the fungus.
2
@Mark.......wow, doc, sticking your neck out a bit, having no personal knowledge of the patient...but then again, you are a specialist at a major medical center....,,,
As someone who has suffered with PMR for two years, I too would have jumped to the conclusion that the man had this disease. It's hard to believe that a fungus infection could mimic PMR so exactly, including that prednisone helped for a while. What a miracle for this man that someone found the cause and a cure. It's not that easy with PMR. Then, again, maybe I have a fungus infection too?!
9
Despite the intense pain, the fact that his inflammatory markers were not elevated was considered odd by his rheumatologist. Unfortunately, no reason is given as to how this might occur. Any thoughts?
1
@Jim
Yes. I suffered from PMR in my 50's and it took many months to be diagnosed because my SED rate, which measures inflammation in the body, was elevated but not spiked. When I was put on prednisone it was a really amazing....the excruciating pain was gone in 24 hours. As reported I was gradually weaned from the prednisone. This was almost 20 years ago. I had one more relapse but it was diagnosed quickly and I have not had an incident since.
Both my rheumatologist and my internist told me a spiked SED rate does not always accompany a PMR diagnosis but the positive response to prednisone always does. Good luck and feel better!
5
@Anne
Thank you for your kind wishes and sharing your experience. Fortunately, I don't have PMR; my interest is scientific.
While not specifically addressing PMR, one pain management clinician published an analysis of over 100 cases from his practice which showed that - consistent with your case - the correlation between pain and inflammation was much weaker than suggested in this article. All the patients had severe pain, but only ~25% also had significant inflammation as measured by CPR or Sed Rate.
Consequently, in the case cited here, had this been the patient’s first flare-up, perhaps the rheumatologist shouldn’t have thought the discrepancy so odd. For me, what was truly odd is that the agreement between pain and inflammation seen in the first episode broke down in the 2nd, and I hoped that possible reasons for the change (to pain with unremarkable levels of inflammatory markers) would be discussed.
1
@jim
That was meant to be CRP, not CPR.
1
My wife, almost 60, has psoriasis and epilepsy, who had a UTI went to see a doctor. Previous UTIs were treated with sulfur based anti-biotics. This time, the doctor prescribed CIPRO, a Fluoroquinolone which had originally been developed for the treatment of Anthrax. Neither my wife nor I are doctors and stupidly trusted the doctors direction. In about two weeks my wife noticed that all of her tendons were in great pain. Because of the extreme pain, she took some Motrin. Her heart started to act erratic and she ended up in the ER. While in the ER, being checked for heart problems the doctor prescribed a drug to help. Being gun shy we asked the nurse to check the side effects of that drug. Believe it or not, the drug could cause heart problems. Then my wife started hallucinating and having suicidal ideation, it passed. That was six years ago. Today my wife has peripheral neuropathy in her hands & feet as well as a large areas of her skin have flare-ups of pain. Along with that, muscle deterioration and blood vein problems in her feet.
The sad thing, the drug had a huge black box warning... don't give the drug to anyone 60 and over, no one with nerve problems, no one with brain nerve problems.
Doctors still prescribe this drug, banned in Europe.
During the exam the doctor was telling us about his mood being down because he had just broke-up with his girl friend and he was from India.
Do you know what you call doctors who graduated last in their class... doctor.
23
@Pray for Help Fluoroquinolone antibiotics can cause Fluoroquinolone-induced tendinopathy and tendon rupture. Usually it happens after the patient has been taking it for a number of weeks, but my Achilles’ tendons began hurting within two days of usinf Cipro. Fortunately, I contacted my doctor immediately and she diagnosed it and I switched to another antibiotic. Unfortunately, it took about six months to be pain free, including physical therapy. At least I didn’t suffer tendon rupture, which would have required surgery.
3
@Pray for Help, why mention that the doctor was “from India”? I think I know the answer, unfortunately.
9
@Passion for Peaches If you are implying that it was racial you would be incorrect...
1
Would someone comment on the Rx of prednisone when one has severe osteoporosis (for which drugs are counterindicated....) Steroids reduce bone density. Many older people have osteoporosis, many severe. So, if a patient presents with an autoimmune disease, which many older people also acquire, one should take prednisone and risk more bone damage ? And, for many, if not most people, symptoms return when steroids are discontinued........[Autoimmune diseases are poorly understood, often idiopathic, and very hard to treat in folks with multiple health conditions...........]
1
@Kallie
I've got arthritis in my hips. Sadly, cortisone is what helps with the pain. I also have osteoporosis and problems with my spine from it. I go as long as I can between shots, but it's not nice. Sometimes, you just don't get all your wishes. Best to get over it.
13
@Kallie
I had PMR in my 50's which was very effectively treated with prednisone. I tapered off of the prednisone over a year's time.
I also have suffered from raging osteoarthritis. That pain is not responsive to prednisone but I did get relief from ibuprofen. The only cure, however, is joint replacement....two knees, a hip and a shoulder. At 77, I am now living and active life with minimal and manageable pain and I am very grateful to have had such excellent medical care.
3
My dad who is 80 had something similar. Excruciating pain in the upper body especially in the mornings, so much so that he couldn't hold a toothbrush. Months of treatment with painkillers and some B12 shots would temporarily relive the symptoms. On a recent visit to see him, we noticed he developed signs of labored breathing and heaving at night. An emergency visit to the ER discovered a large patch of pneumonia in this right lung. His blood oxygen levels were low and had developed incontinence almost overnight. Aggressive treatment with antibiotics and some physiotherapy got rid of the pneumonia and the pain for the most part. We are still not sure about the cause for his extreme pain. Is immunotherapy then a feasible option for conditions as this?
4
Interesting that moden advice is that kids nowadays aren’t exposed to enough “dirt” and that is the cause of so many peanut and other food allergies as well as other immune problems like asthma, and the recommendation is for young kids to visit a petting zoo or better yet, live on a farm. Yet in this case, and others in the comments section, there are serious illnesses linked to working outdoors or in the garden. Is it just a matter of what age the exposure occurs and our ability to respond, or is it just hit or miss?
8
@SAB
So, my son who is highly allergic decided to get a dog to deter his kids from allergies. They love the dog. I'm not sure that it's done anything for allergies, but the severity of his case is rare.
2
@SAB
I love this world, but it doesn’t seem to be set up that way: we can’t just find and follow the right rules and be guaranteed health. I get my kids vaccinated and also take them to a friend’s farm a couple of times a week. But anything can happen and usually does!
2
A story well told. Thank you
6
Reading this story I struggle to see the superiority of the U.S. healthcare system as claimed by many. The delay in an accurate diagnosis meant the patient was subject to a host of ineffective drugs and their side effects; the threat of cancer loomed but they were unable to see a lung specialist for weeks; save for the patient's wife speaking on her husband's behalf, the suggestion is that the doctor would have continued prescribing medication based on non verbal patient feedback. Finally, it's presumed the patient had insurance, but what if he didn't?
32
@Aristotle The belief in the superiority of the American Health Care system is a fantasy. The US spends nearly twice the amount of other developed countries yet has lower life expectancy and higher infant mortality rates. The President, hospitals, drug companies and health insurance industry will want you to believe we have the greatest system but even a few minutes research will prove that wrong.
43
@Aristotle
It's hard sometimes for the doctors. I slowly developed a very painful frozen shoulder, and my back was getting bad....difficult to even bend over. When I saw the gyn for at the annual check up, she discovered ovarian cancer. The morning after surgery for the cancer, the frozen shoulder and back pain had disappeared.
12
@Aristotle Because, actually, diagnosis is difficult because of the way symptoms present, and the overlap of symptoms.
5
We see this quite commonly in the upper Midwest, along with its companion, giant cell arthritis. It seems to be common among those whose ancestors were from Northern Europe. A colleague even termed it “Norwegian Arthritis “! It was a good call to remember that fungal infections and malignancies can also cause inflammatory myopathies which mimic this condition.
30
What stood out to me about this story was the sad fact that a patient with severe symptoms, possible cancer and a situation who's outcome could be time dependent would be told he had to wait "several weeks" to see a relevant specialist. After all, aren't such waits one of the major arguments against a Canadian type health care system? Unfortunately, we have managed to leave ourselves with a system that combines the waits of the Canadian system with the bureaucracy of the British system but with the costs of, well...the American system.
82
@Bob you do seem to be making assumptions about the functioning of health care systems other than the American one. Unless you have direct experience with either the Canadian or British. Otherwise, it is more than presumptuous to declare that there are waits in the Canadian system when a serious health issue is afoot.
22
@Lyn I don't think Bob meant to be hurtful. He was citing the common complaints we in the US hear about the Canadian and British systems while pointing out that the US system is not any better. Of course serious illness in Canada is addressed appropriately. Apparently Canadians like to do elective surgery in the US, though, where it can be done more quickly.
2
@Bob He was in surgery the next day! I am on the Italian health system and in the immigrant language lesson book is an example of the Italian system (which is ranked 2nd in Europe by the WHO): expect to be waiting 4 months for an eye exam... and pay in advance when making the appointment. There are lots of misconceptions, both ways, about US and European systems.
3
i had a cryptoccous infection on my lung - a 35mm leason - only after a took a hard fall on my chest and starting to spit up blood was the infection found. it took 2 weeks at Mass General for the infectious desise doctors to figure out what i had. it took 2 week for the tests to grow. (ps: the care at MGH was Very Good.)
23
PMR is such a mysterious diagnosis. Someone close to me suffered with this diagnosis not just once, but twice. We called it the Tin Man disease from the Wizard of Oz because this person could not move as if he needed oil like the Tin Man. Prednisone helped, but it was just a bandaid. After 18 years of blood tests, bone marrow test, and other real indicators, it was finally confirmed this person had Waldenstrom macroglobulemia, an indolent blood cancer, a very rare disease, but fortunately was being studied at the Bing Center for Waldenstrom at the Dana Farber Cancer Institute in Boston. And the lesson is to advocate for yourself and never give up searching for the answers.
44
How much did all this treatment cost the patient?
10
@John Manson It should cost about 6% extra income tax, every year, for every working American, if "Medicare for All" is passed, according to NYT estimate. It might be worth it, of course. And European coverage is not free: in Italy 23%-43% income tax, plus circa 1% local tax, 22% sales tax (VAT), and some co-pays as well.
1
Thank you. The article clearly shows that there are many different types of fungus among us.
17
So many things went wrong for this gentleman.
Is a swollen hand typical for someone working around a woodpile? I would have expected back pain or shoulder pain from this activity, but a swollen, warm, painful hand, without specific injury to the hand, is highly improbable. That was the first clue that something was wrong systemically.
He did not have flu-like symptoms, a fever, or a rash, so why a high degree of suspicion for Lyme? Everyone is Connecticut with joint pain has Lyme?
The elevated inflammatory markers, which I'm assuming were c-reactive protein and SED rate, imply that an infection is present or possibly a hypervigilant immune system. Injecting prednisone and taking a course of it orally, without ruling out an infection, was clearly a medical error. Also, the fungus attacking this gentleman's lungs was likely aided by the prednisone therapy, and killing off his intestinal flora with the doxy did help either.
So what made this man susceptible to a serious fungal infection? Each day we are exposed to fungal spores in the air we breathe. Why don't we all develop infections from those spores? I hope this gentleman is working on strengthening his immune system because he's likely to have additional problems if he doesn't.
I'm willing to bet that if the physicians who examined and treated this gentleman had more than the customary 7 minute office visit they might have identified the problem quicker. End corporate medicine!!!!
57
@Hungry in the US?
when reading this my first thought was lyme disease, as i myself had lyme disease that luckily was successfully treated.
swollen and painful right hand could be where the tick bit, and painful joints/difficulty moving is a hallmark sign of lyme arthritis, which seems to set in nearly overnight.
i got lyme when i was 27 and i was hiking mountains at least once a week. within a week or two i woke up one morning, went to get out of bed to walk 50 ft to the bathroom and the pain was so bad i had to CRAWL to the bathroom!
im glad this guy got proper treatment and that it wasnt lyme, which if it isnt properly treated it can become chronic instead of acute.
also, regarding lyme disease, the tests are not foolproof, where i am, if you exhibit symptoms of lyme disease you are treated for lyme disease without question.
24
@Ashley
Chronic Lyme Disease is a dubious diagnosis at best
The fact is there is an industry which lives off this.
4
Exactly what happened to me. Thanks!
6
As a functional medicine doctor, we are trained to evaluate and treat fungal, parasitic, and/or bacterial infections that are causing systemic inflammation in these types of patients that are “falling apart at the seams.” Many times the infection is in the gut but it can be an occult walking pneumonia, Tuberculosis or Tick Borne illness, etc that is causing chronic immune stimulation. Even in cases where there is clear musculoskeletal pathology, the underlying reasons for wide spread ligamentous laxity and the subsequent injuries that follow can be due to the inflammation caused by an infection left untreated.
Taking an NSAID or a course of steroids is never a long term answer and in many cases these can be harmful to the immune system and the microbiome.
I’m glad to see in the end, after a thorough work up, the answer was found and this patient had a life transforming outcome.
24
It’s disturbing that the laboratory in this story can’t distinguish between blastomycosis and cryptococcus, as these are distinctly different organisms and easily differentiated.
16
@MBKB They were waiting for the culture/spores to grow, I think.
2
As a rheumatologist, I am aware that PMR is a syndrome - a collection of signs and symptoms, rather than a disease that has a single, known cause. Most PMR patients have idiopathic PMR - they are elderly, have a very elevated ESR, no evidence of cancer or infection, and no evidence of giant cell arteritis - an inflammatory blood vessel disease, or another autoimmune disease such as rheumatoid arthritis, systemic lupus, erythematosus, or Hashimoto's thyroiditis. However, a considerable number of PMR patients have one of these other diseases as a cause of their PMR signs and symptoms. When a patient presents with PMR it is best to take a careful history, perform a physical exam, and do simple, inexpensive lab tests to screen for the specific causes; if they are not found, patients can be treated with a low dose of a corticosteroid, such as prednisone, to see if they rapidly improve. If a higher dose of steroid is required, if there is no or only partial improvement, or if new signs and symptoms occur, a more elaborate, costly, and possibly invasive search for a specific, primary cause for the PMR is justified and necessary. An elaborate, costly, and invasive search for a specific cause of PMR in every patient who presented with this condition would be wasteful and do the patient more harm than good.
25
It's time to bring in AI to see if the computer is correct in these diagnoses. Week in and out I have read for years about cases that stump doctors on end while the patient suffers. Typically one lucky doctor finally arrives at the correct diagnosis. And I always wonder what the computer would say. Perhaps something along the lines of I beat Gary Kasparov, I think I can do this.
20
@Douglas ritter That computer beat one man's tactics - Kasparov. It was rapidly dismantled after the match. It took many technicians years to input his tactics. He was beaten by a dumb hammer. My frying pan doesn't diagnose my continuous allergies very well either.
6
Interesting. I wonder if there are any medical doctors or nurses out there who might at least consider the possibility that masking an unknown with pain killers is wrong.
"The doctor prescribed some ibuprofen and suggested that maybe he was too old for that kind of heavy labor."
Now here is my antidote: While pulling weeds building a prairie I often got fungal infections which were easily cured with hot water for just a minute or so. Once I quit wearing old wet fungus harboring gloves, the problem ended.
And one more: I picked up a fungal infection in my lungs on a train is Spain 30 years ago. The medics antibiotics didn't help nor did the pain killer. I was spiraling south with gout flaring as well when I self medicated with rose dust. One treatment killed the fungus. Or maybe it was just a coincidence. I'll bet on the rose dust.
And yes I now take allopurinol so no more gout. Thank you doctors!
18
@Larry Craig Because he was in debilitating pain? And they provided other treatment as well.
1
I am a surgeon and note that it would take "weeks" to see the lung specialist, but the surgeon saw him the same day. This is typical. So, in the rush to criticize "proceduralists" and elevate "cognitive" physicians, I would ask that timely service be taken into account.
47
@Eric
Right, and surgeons and other non- cognitive specialists get paid considerably more than cognitive specialists. As a result, there is generally a relative oversupply of surgical specialists compared with cognitive specialists, certainly in our community. Supply and demand suggests that if there is a high demand and low supply, it will take time to get in to see the physician. In addition, managing complex cases takes time. I share offices with surgical specialists, and I see how much time they spend with patients. I couldn't begin to figure out my patients in that time. Maybe surgeons are smarter. If so, I would be happy to send them my MS patients, epilepsy patients with migraines, and myasthenia patients. On the other had, as some have suggested, AI will be able to out diagnose and treat the patients seen by cognitive specialists. So maybe in the future, we won't be needed. (Although my sense is that AI replacing physicians is like fusion replacing other sources of energy....)
17
AI is not going to replace doctors. What AI is good for is going through masses of treatment and other clinical information to assist the diagnostician.
8
@Eric
My hand surgeon wouldn't get me in the same day. and I
had been his patient for several years.
Perhaps it is typical for surgeons to get patients in the same day, but that has not not my experience.
I have had three surgeries. Post surgically, I was relegated to P.As, including when I hemorrhaged after surgery , as a result of the surgeon's having instructed me to continue taking NSAIDs prior to surgery.
Not one of the three surgeons would return the call of a patient on whom he /she had just operated, who was experiencing post surgical complications.
Each time, I was advised to go to an E.R, and ended up with a P.A..
On Friday, an office manager called at the request of the knee surgeon who was concerned when an MRI of my spine revealed a large mass. An hour later, the office manager called to inform me that there was a tear in my meniscus. She couldn't tell me if this requires surgery , given that she is a office manager.If the Doctor could not call me, I would have preferred that he wait until our next office visit and informed me of the torn meniscus and of the mass when I saw him next.
I don't believe that any patient should receive a call from an office manager relaying that a CT scan has revealed that she might have cancer.
8
In diagnosing, the devils in the details. It was the woodpile that caught my attention. After having fresh wood mulch spread in my yard I pruned a large rose bush. The rose thorn that lodged deeply in my finger [and I was wearing gloves] was a perfect vehicle to deliver a fungal infection into my body. Finger swelled, became red and inflamed, difficult to flex. Two infectious disease specialist told me mulch was a toxic stew. I saw a surgeon to remove the thorn. Diagnosed with sporotrichosis I ended up on anti-fungal medication for 9 months. What I learned was that in working in a garden wear good gloves, don't use wood mulch that's been sitting in piles, spray tick repellant on your shoes, be careful what you inhale/wear a mask, shower after gardening and check for ticks. And then enjoy your garden.
115
One of the many reasons I don't putter in the garden. Oh yeah. And my bug phobia.
13
@MWG - Where is that hazmat team when we need them?
8
@MWG
YES.
Reading this I remembered being warned about this years ago.( what I had turned out to be what is now the usual suspect, not yet well known. Lyme Disease,.
Not just mulch, but any soil mix you might consider has to be treated as hazardous especially if you have cuts. (I always had cuts back then...)
I could never stand wearing a face mask for long . . . and once ended up with a sinus infection from breathing in dust stirred up while cleaning an area in an old farm house. Luckily it was bacterial and responded to antibiotics. Next time I'd hire someone who has the proper equipment!
And wear safety glasses even when hand pruning, i managed to flick a piece of my cornea out when a twig snapped into my eye. Infection was prevented with an antibiotic but it's not a fun recovery,
9
Imagine if you only had Medicaid as your insurance or no insurance at all because you can't afford it. You would die period.
99
In our state Medicaid is one of the best insurances with few restrictions and broad coverage.
11
@Ellen F. Dobson
..or VA care. When I reported similar symptoms, I was told I was lazy.
I have settled on using outside services for diagnosis and VA services for treatment if I feel comfortable. I still feel luckier than some.
8
In the US you would, yes.
2
Does anyone know is the fungus mentioned in this article is the same as (severe) toenail fungus?
I know someone exhibiting similar symptoms and while self and internet diagnosis can be drive both patients and doctors crazy, it “couldn’t hurt to ask.”
Thank you.
13
I’ve had diabetes for over forty years, and I got toenail fungus several times as an older adult. I never had accompanying joint pain. I took a three-month course of Terbinafine and that wiped it out.
4
@Person it is absolutely not the same as the fungi that can cause toenail infections. Typical toenail fungus does not cause systemic disease or symptoms.
9
hmm, a remarkable number of these responses have to do w PMR and prednisone.
7
This article could have been a bit more informational if the linkage wasn't falsely suggested that smoking was the only reason to scan for lung cancer. "He smoked when he was younger — had he had the screening chest CT that is recommended for those who’d smoked? No." Lung cancer - which kills more people than any other cancer each year - does not only appear in those who have smoked.
20
@Jenny
CT scans to screen for cancer are only recommended for people with a significant smoking history (negatives outweight positives for those without a 30+ pack year history of smoking). This patient might have warranted a scan anyway, as this wasn't really a screen---the patient was symptomatic and they were trying to find a cause.
18
He’s lucky he didn’t end up worse off than where he started.
12
I sympathize with the trials this poor patient went through, but lucky for him he was a man. A woman presenting with the described puzzling symptoms likely would have been written off as neurotic - or worse.
166
@Theo- So very true indeed, and yet, his ridiculous male ego was too fragile to convey the depth or intensity of his pain to the doctor, and required his wife to speak up on his behalf. I guess women's words are only meaningful when they are a proxy for men's.
26
How unfair. Why assume he was reluctant to speak up due to a "fragile male ego" ? Many people are brought up to avoid complaining and tough it out, sometimes to their detriment.
8
@Amy
Medical statistics show that most PMR patients are women. It took a long time for my doctors to come up with a diagnosis because of my age, I was years younger than the typical PMR patient.
It had nothing to do with my sex. I sometimes wonder if all of this male bashing is more a reflection of personal attitudes than society as a whole.
2
When we were teenagers in the 1970s, my brother became ill with hearing loss and a lump on his neck. The doctors in Orange County, California saw some spots on his chest X-ray and said tuberculosis. That was soon ruled out and the scars on his lungs were from histoplasmosis that he probably contracted as a small child in Mississippi. Eventually they diagnosed him with Hodgkin’s disease and our dad, who was in the Air Force, took him to San Antonio to be treated at an Air Force hospital that was supposed to be about the best place in the country for treatment of that disease.
In those days there were no CT scans or MRIs. Cancer diagnosis was often made through surgery and biopsy. My brother was prepared for a laparotomy (I believe) where they were going to cut him open from the breastbone to the navel, take out his spleen, and remove numerous lymph nodes.
The day before the surgery, a pathologist from M.D. Anderson cancer center took a look at my brother’s biopsy slides and said to call off the surgery because he didn’t have Hodgkin’s disease. Eventually he was diagnosed with, and successfully treated for, nasopharyngeal cancer. My brother is still alive today, 60 years old. He has some very serious health issues related to the cancer treatment, but at least he is still here. All thanks to that pathologist at M.D. Anderson.
56
The case of mistaken identity. Hardly new or unusual in medicine. A century ago, syphilus was labeled the great masquerader. It's hardly surprising that other infections have taken its place.
Meticulous investigation when the usual and customary is not evident. The only requirement is for the investigator to acknowledge: "I don't know." From such a premise, dogged critique of findings of clues and such clues being held up to the light, mean a better outcome for patients.
26
I was diagnosed with sarcoidosis of the lungs about 20 years ago. Except that I also had nosebleeds and nodules on my arms, my symptoms matched this gentleman's almost to the letter. I am so glad he is better. I have been in remission 18 years.
40
@Lynn As I read the article I was thinking "Sarcoidosis." I still am.
18
Until we have the TriCorder that Bones used in Star Trek, we'll always have multiple conditions that have identical symptoms, and by the uniqueness of the patient, may or may not have cardinal symptoms.
Very few diseases have a pathognomonic symptom that will be a slam dunk.
All too often these tales are of mystery, implied condescension from a primary doctor and one of specialists thinking of only one thing... surgery.
Many diseases have no blood, urine or radiology test to nail them down. Different people with Lyme disease, for example, have different symptoms and at different degrees of expression.
To me the lessons learned is to have a receptive ear with your primary doctor, be able to give and take. Hope you have good enough insurance that you can take the blood or Xray tests that your provider suggests. Hope that your provider is a member of a large group with respected specialists who are happy to give a 'curb side consult' to guide you and your doctor to the real diagnosis without waiting months to get in for an appointment.
I recall a friend's husband, a young late 20s, who appeared to have a pulmonary cancer based on Xrays and a CT scan, the only things available at the time. He wasn't in the Ohio River Valley, and the concern for blastomycosis was low. Yet he worked one summer cutting wood and leading some kids in the summer business. He was the only one with a blasto from that business. Thank goodness there was a non-cancer diagnosis, and a treatment.
39
Great article. I have Hashimoto’s, an autoimmune disorder where the body attacks thyroid tissue, and was told by my endocrinologist that there’s nothing you can do. It could take 2-70 years for my thyroid to burn out and to just monitor it until the inexorable script for a thyroid med. I began working with a nutritionist who specializes in autoimmune thyroid disorders and lo and behold my thyroid antibody numbers have dropped by over 50% within the last year after treating h. Pylori, vitamin D and going gluten free. I’m certain in the next 5-10 years we are going to see more studies exploring correlation between the gut and autoimmunity as well as inflammation resulting from bacterial, fungal and viral pathogens.
62
Last July, I was with a group that rescued dogs from a horrible puppy mill. It was on a ranch, and there were also exotic animals-emus, mini pigs, birds, donkeys, etc. It was hot, dusty, and disgusting. (All animals were rescued.) My husband got a cold, and I got a weird illness a couple days later involving my chest, GI system, high temperature, and finally some delusions for several days. I finally got to a doctor who didn’t believe my theory I got something related to the rescue. (I’m an RN, too.) I got antibiotics and steroids, and immediately improved. I had previously signed up for a CAT scan for a preventative calcium heart test. When I got it a couple days later, I got multiple calls about enlarged lymph nodes in my lungs. (Never smoked.) This involved 6 months of follow up with a pulmonologist who was open to my theory, and 2 more CAT scans. Luckily, everything resolved, and my lungs are back to normal. Bizarre.
53
Fibromyalgia.
3
Fibromyalgia is not an inflammatory process and would not have responded to steroids or any other anti-inflammatory drugs.
14
@EJavaM07 there is no elevation of inflammatory markers with fibromyalgia.
12
@EJavaM07 Unfortunately, FMS can be a big bucket to which diagnosis failures jump into. Advancements in understanding FMS are being made, but I don't think there is a cure.
6
Great article. Differential Diagnosis! It is one of the most important tools in a doctor's toolbox. Dr. Sanders is correct: it is an art.
28
Dr John Sarno would have said TMS
3
@Joseph, I love Sarno and owe him a huge debt of gratitude. However, this doesn’t sound like TMS... more like a specific fungal infection.
1
Not likely. TMS is diagnosed when clinical, laboratory, and imaging tests r/o tissue-based causes of pain. Chronic pain for most peeps is a brain-based aberrant pain and emotional processing disorder. These people really suffer! Read David Hanscom, MD's book for more on this topic.
I love reading this column. Can anyone recommend any medical whodunit books??
27
@greddy Both Michael Crichton and Robin Cook were physicians. Cook wrote mostly medical thrillers. Coma was a movie based on a Cook book. Outbreak also.
One of my fav Crichton books (I've read all of his) was Timeline, movie is good too. Crichton books tend to be more technical, and keep in mind that Crichton was a misogynist (his 900+ page autobiography), but it doesn't always show in his writings, except in Disclosure.
google search: "best medical thriller books" You'll get all kinds of suggestions.
My most recent fav book is "Water for Elephants" not a medical thriller, but a very interesting read based on real events.
11
@greddy Look up books by Berton Roueche, they are classics on the subject. I was assigned Eleven Blue Men in high school.
9
Thank you for the recommendation!
2
Fungus should not be described as "bugs."
56
As someone with multiple tick borne diseases including Lyme, everyone needs to understand that the testing for tick borne diseases is incredibly flawed. A negative result doesn’t mean you aren’t suffering from a tick borne disease. Many states are now passing laws declaring a negative test result doesn’t mean you don’t have a tick borne disease.
There are numerous tick borne diseases. Lyme and co-infections are the fastest growing infectious disease in the world. It’s truly a pandemic.
While doxycycline is one of the antibiotics used for treating Lyme disease a bacterial infection, it is not the treatment for Babesia. Babesia responds to malaria medication combined with antibiotics. I went to about 30 doctors. I received a positive Lyme result from Igenex lab.
Most doctors are not informed of the flawed testing. Unfortunately tick borne diseases are highly controversial at the moment. This is the new AIDS/ HIV crisis of our time.
http://www.betterhealthguy.com/lyme/testing?epik=dj0yJnU9NFZMNG5EeTF5anZCQTJqMzE3clAzREJuN1pZTl9vM3Imbj1YMWc4ZVlBa2dETnNKOV9xSmZTMGlnJm09MyZ0PUFBQUFBRno3X0NB#sthash.vsQycmBB.qjtuhil
26
@Nina Henderson
Your last paragraph is absolute fatuous medical and scientific nonsense!
Any good physician is very well aware of, and alert to, the many tick borne diseases, their diagnosis, and their therapies.
The problem, unfortunately for patients, is that sometimes the diseases' symptoms and presentations overlap, or are atypical, or even absent. THEN it becomes a more lengthy and difficult matter to uncover the causative organism and make a specific diagnosis.
There is absolutely no crisis at all regarding these related diseases, other than one needlessly manufactured by you and others who think like you.
42
How many times do we doctors have to hear that we’re ill-informed about Lyme disease? It’s amazing how well informed so many patients seem to be about it. Good luck to you, anyway
19
@Bob I was taught extensively about testing for tick-borne disease and all of the pitfalls.
8
Don’t get me wrong. I am very happy for the gentleman who shared his story and now lives to talk about it pain-free. But I can’t resist medical humor, and think it’s good for what ails you so please humor me...
Doc: Sorry but you have 10 to live.
Patient: Doc is that years, months, what?
Doc:9...8...7...
18
I acquired classic symptoms of PMR at the classic age of 70. The pain was really rough. Round the clock Naprosyn and Ibuprofen made it more tolerable, but getting out of bed in the AM required flopping around like a seal, then sliding out and a lot of crying. It was 5 weeks until I was put on Prednisone by my primary and another 10 weeks until I could get an appointment with a rheumatologist. I do have to laugh about the negative press that socialized medicine gets, that you have to wait. Well waiting for 2.5 months to see a specialist was a long time. This disease may not be fatal, but it is very painful.
91
My father died from exposure to this fungus while he was in a Wisconsin hospital. It's serious business.
62
@Monica
I liked your comment for sharing how dangerous this fungus can be. My condolences on your loss.
18
Great ending as the pain was gone, but illustrates how little the medical knows as my main concern was why didn't his blood work show he had a fungus??
8
Because it’s not in the blood and doesn’t show up in the bloodwork
59
As a retired doc, I see several errors in this case.
1. Doc 1 blew him off
2. Doc 2 looked only in his specialty at the beginning; elevated sed rate should have prompted a search for an infectious disease and/or malignancy far earlier.
3. Docs 1&2 sat on an abnormal CXR
IF the man were regarded as we do inpatients, they would have pursued a diagnosis in DAYS.
Diagnosis delayed is treatment denied.
141
@DSwansonRaised ESR in the clinical setting described indicates an inflammatory disease like RA PMR and the like.Malignancy always lurks in the background in similar situation.As a retired Rheumatologist in community practice Fungus would have been way down the list in my differential diagnosis.Retrospective analysis though is always fun.
16
I agree. As a practicing Orthopaedist who sees a lot of older folks with PMR it’s a lot more common than fungal disease like histoplasmosis or coccidiomycosis. Plus PMR is first on every practitioners when patient has high ESR and multiple arthralgias.
The retrospectroscope is always 20/20.
29
@Craig in Orygun
I'm a primary care doc and diagnose and treat PMR with some frequency. I think the rheum. showed good reasoning and judgement; he followed the patient closely, when the symptoms worsened despite therapy he sought help from colleagues (showing a healthy check on the ol' ego) instead of say increasing prednisone or starting another immune suppressive, which could have been disastrous. Most importantly, he didn't give up on this man.
52
I think it is an error to call a fungus a ‘bug.’ This can mistakenly lead people to think that they can inhale bugs that will give them similar problems as were described in the article. At best, it leaves readers wondering what she is talking about. I had to go back and re-read to make sure I hadn’t missed something. Spores, not bugs. I am surprised and disappointed that Dr Sanders would condescend to her readers in such a way.
33
@Jennifer deBeer It’s just an oversight, a very commonly used way of talking about microorganisms for those in medicine.
3
“Bug” is doctor slang for any infectious organism. I don’t care for it myself, but it was not condescending here, actually quite the opposite.
11
Did he have an HMO?
I went through a fungal infection in the lung, aspergillosis, 2 years ago. The symptoms were daily increasing breathlessness and wasting.
I had a PPO at the time, researched pulmonologists in my area, and got in to see one within a few days. Thank goodness he was knowledgeable and the problem fell within his specialty. There is so much to learn today, so when a problem is out of their area, doctors oftentimes just don't know.
Fungal infections will kill you. They are no small thing. If this man only had to take an anti fungal for 3 months, and it never comes back, then he is lucky. These are very resistant infections with only about 3 strong drugs to choose from.
I so very much dread ever having to be on a HMO. Of course, like their schools, people will say "yes they have lots of problems, but not MINE".
I know painting with a broad brush is not 100% accurate, but GPs are not to be entrusted with serious issues either.
You can bet a lot more people die of Unrecognized fungal infections than we know of.
24
This is the kind of case study that could yield significant insights into how to improve the practice of medicine. More effective, more efficient, and less costly. Today, we hear much too much about who is going to pay the premium or how the benefits are going to be sliced and diced. Where oh where have these such studies gone, but to graveyards everywhere! For most patients with un and mis diagnosed afflictions, which I have been one, the journey is littered with specialists that over estimate their knowledge base, cause harm, intentionally fail to read the patient history, glad handle the patient or just have outright bad bedside manner, and get paid as much as three hundred dollars for a faux evaluation. Most aggravating is the limitations in their curiosity. They stay confined to a very narrow scope of investigation. A multidisciplinary orientation is not cost effective for them. Medicine is doctor centric at the expense of the patient. Start with a stellar team of specialists from diverse disciplines. Let them program an AI system that can be systematically updated. Then allow a nurse practitioner, whom is more likely than the typical M.D. to have good social skills, to be the one to use such an AI medical system. And, patent outcomes might be better than what we experience today.
27
@william phillips When an older person presents with joint pain, elevated ESR, and no pulmonary symptoms, you have to first assume it is the most common entity. That actually makes medicine more efficient than assuming everyone has a zebra. Every once in a while, someone will have in incredibly rare syndrome, and smart people will write articles like these to make sure we are all aware. This was not careless medicine, but just what it takes to get to an uncommon diagnosis
25
@Mrippe
Heavy steroids, benign?
Appreciative of a balanced viewpoint but sounds too much like protection of status quo. Yes, it would be a mistake to assume that all etiology is a zebra but I believe that you miss my point. Too many practitioners, like yourself perhaps, should be more reflective of the process of treatment with less defensiveness. There are good medical doctors, just not enough of them that can see past their specialty. My father was one. He was a GP from another era,
3
@William phillips
Clearly your disease has to be someone's fault or at least the putative delay in its diagnosis has to be someone's fault. The reflex assignation of blame has become our pop culture of retaliation for what we perceive should be abject perfection dutifully applied always on our behalf. Yet this entire story that you apparently read and are now commenting on is how a physician stuck with their patient, did not give up, used trusted colleague's expertise and ultimately arrived where they should have. You are wrestling defeat out of the jaws of victory.
You are right about one thing though. "The most important ingredient in great patient care is to care about the patient." Most of us will take that over your best "AI" any day.
8
I am grateful for specialists and the depth of their knowledge of their own field. However, in many cases, the patient with a mysterious. stubborn malady is left to his or her own devices to find the relevant doctor at the end of a long trail and fight for a cure for his or her problem -- sometimes not in time. Why can't there be more whole-patient approaches or methods -- something like the Mayo Clinic -- and let the generalists and specialists come to the patient, share findings, and focus on a solution?
101
@nativetex
You are completely correct. Medicine should be more collaborative. But, there are powerful reasons not to be. At one time a well trained generalist or Internal Medicine specialist functioned as the" quarterback" for people with complex illnesses and followed them into and out of the hospital and referred them appropriately to their best team of experts to arrive at a good solution. Now many patients want the sub specialist they want right now so they bypass the Internal Medicine doctor because they or their family are convinced they need to see the cardiologist or gastroenterologist right now. The patient in these cases demands and assumes their own coordination. These "internists" are often now pajoritively viewed as "gate keepers and triage nurses" when in fact many have broad training in complex disease management. In addition generalists are paid poorly. and many have left the field to further "specialize". They may end up working just in hospital settings on the sickest and often fataly ill patients. You might never see them until your are in your 90's with dementia and diabetes and pneumonia all at the same time. These doctors are now very rare in the community setting where they could frankly do more good. Insurance companies now pay for visits measured in minutes. A family doctor can manage a respiratory illness in a child in 15 minutes. Managing a case like is presented here takes hours of often uncompensated time.
13
Going through the process of diagnosing which of the over 1500 autoimmune diseases to treat is one of the most difficult parts of having one. After many years, I was given a "working"diagnosis of PMR. I was just so grateful to have a "disease" which had an actual brochure to read that matched my symptoms and spelled out a process for treatment. So many autoimmune symptoms seem subjective. (Is your pain a "3" or "5") I was set up with medicines to take and had blood tests every 3 to 4 months to check on the progress of inflamation markers. Five years later the markers are still above normal although less than when treatment started. My pain is under control with pain medication, but I do have significant "flare-ups".
PMR is not the only diagnosis I have. Like many people my age there other medical issues which affect my daily living, some of which require drugs and tests.
Dr. Sander's article is correct. A change in physicians, a new drug, a change in what drugs one's insurance plan will pay for can completely change the diagnosis and treatment for the same autoimmune symptoms. It is a matter of luck, not skill. A state legislature's (despite all the "I am not a doctor" talk by politicians) change whether internists can prescribe "tramadol" for pain creates major issues for many who have chronic pain.
I hope that research is allowed for the many autoimmune diseases that increasingly affect people's lives. It is needed.
63
With this man's history and symptoms - all indicative of a profound systemic inflammatory disease - why a plain chest film was not done early on (concurrent with the multiple labs engendered by the continuing symptoms and course) escapes me.
A medical student would have suggested such: it's safe, readily available, fast, and cheap.
38
@Bob
My son who is in his 40s now developed Hodgkin’s Lymphoma when he was in 4th grade—a very unusual cancer in that age group...the pediatrician and ENT who treated him initially for his symptoms refused to give a chest x-ray because of how “dangerous” radiation would be to him at his young age...
Unfortunately they were willing to misdiagnose classic symptoms and have him endure a fairly dangerous biopsy surgery before the diagnosis—delivered on Christmas Eve over the phone, no less...
A chest x-ray done at Cooks’s Children’s Hospital in FTW TX showed the classic “string of pearls” in the chest and his enlarged spleen....
His cancer could have been diagnosed almost immediately if either doctor had been willing to take a chest x-ray and treatment started months sooner...
And this was 30 yrs ago—nothing to do with the quagmire that is modern medicine today:
Just doctors who refused to listen to a mom who kept asking why aren’t you looking for Hodgkin’s???
3
I planted five plants one weekend several years ago and used several large bags of organic soil and compost to enrich the poor soil. At the end of the day, I was covered head to toe with dirt from my activities. A few days later I had excruciating pain in my side, had trouble breathing, and sleeping, had a dry heaving cough and I was burning up.
I went to a physician's assistant and they thought I had the flu and sent me home with antibotics. She said I didn't have a fever even though my upper lip was dripping sweat. My symptoms continued to worsen and I finally able to see my regular doctor. At first he thought I had Whooping Cough (but the test came back negative), he then thought I had typhus (I didn't). Four weeks later (after 4 doctor's visits and a lung x-ray) he diagnosed me with pneumonia. I could feel my lungs crackingly when I breathed and the pain in one of my lungs felt like a knife had been inserted into my side. My brain was also very foggy. By the time he made the diagnosis, the fluid in my lungs was almost gone. It took me over 2 months to fully recover and to have my lungs not crackle when I breathed
Weeks later I read an article that working around organic soils can cause pneumonia. I saw my doctor a year later in the grocery store and told him how I think I got pneumonia.
77
@Sasha Love
for the future: flu is caused by a virus, so an antibiotic is NOT the thing to take, and could make matters worse.
Glad you figured out your disease.
10
@Susan I stopped seeing that doctor because it took him nearly a month to diagnose me with pneumonia and the physician's assistant was useless.
1
After months of varying diagnosis, my husband finally had to as his doctor to test him for blasto. He was right and responded fairly well. Our dog also had blasto, but died from it despite treatment .
30
For me, personally, this article is about a year late. I just stopped my prednisone (having reduced it to 1mg/day)
which has effectively rid me of my PMR after about a year.
My experience/impressions:
1. Physicians in general have not been that conversant
about PMR. I suspect that this is changing -- and fast, as
we live longer. I originally went to an orthopedist about
the pain. He took an x-ray and saw the residue of an old problem in my right shoulder where the pain focused.
He offered to follow up with surgery in view. I demurred
and checked with my PCP, a gastroenterologist. He wasn't
convinced of what ailed me, but told me: "Ed, I'd like you to
take 5mg of prednisone tonight and call me in the morning."
I made the call with the message "Mirabile dictu, Bill! NO
PAIN!
2. One item I was looking for, but did not find in the
comments, was a characterization of the onset of PMR.
Commonly the problem begins with a stiff shoulder, then
somewhat later, a similar problem in the other shoulder.
The discomfort yielding to pain eventually appears in the
hips. I believe this sequence occurs often enough to be
call characteristic. I'd like to see comments on this.
22
@Il Professore I was taught to always consider PMR/Giant Cell Arteritis in elderly people who have been pain-free but now have a relatively sudden onset of pain. When the pain is a headache, blindness becomes a concern. Polymyositis can do the same thing regarding location, but that produces proximal weakness (shoulder, hip musculature involved). An elevated sed rate and rapid response to low dose steroids (often a few mg a day, as you began) are other signs.
10
PMR is a very common condition, often difficult to identify with certainty because inflammatory factors may or may not be present. Usually a short dose of prednisone is prescribed & if symptoms promptly abate, it's presumptive PMR. But loads of things can present this way, most of them rare. Reactive arthritic conditions secondary to a STI or food poisoning, immune system reactions to fungi and mildews, onset of lupus or a bevy of similar auto immune disorders, etc. All of these conditions, save reactive arthritis, are much more common in middle aged to older women than men, for reasons that are not understood but must have to do with differences in immune system response, likely related to pregnancy. Unfortunately, treatments like immune system suppression or treatment with steroids are dangerous and associated with a host of nasty side-effects. Guessing what something might be and then administering powerful and risky treatments isn't the greatest, but pretty much sums up where we're at with auto immune diseases. Guessing right the first time is much aided if the place where the patient presents is a known hot spot for Lyme disease, fungal spore lung infections, etc.
33
My takeaway from this article is this: Pain, persistent pain is nature's way of telling you there is something wrong. Too many times people, especially men, self diagnose and treat pain with OTC meds delaying a consult with a professional. It even says on all those pain medications we buy at the pharmacy if the symptoms persists for a week or longer to seek medical help. Many older men are stoical about pain and delay necessary treatment.
As far as getting an appointment is concerned, be persistent. Your life may depend upon it.
63
@JJS And the "stoic" (aka fragile ego), men waiting until they are in a crisis state helps drive up costs with their advanced problems, and clogs the system, when they could have just gone to the doctor and been honest about their issues much, much earlier.
3
My father (late 80s) had a very similar presentation that developed more gradually and was diagnosed as PMR. Prednisone helped but produced severe swelling in his lower legs, resulting in the skin actually cracking open. And, once off prednisone, the symptoms recurred. We tried steroid injections (methylprednisolone) quarterly, which provided temporary relief but gradually wore off. He was tested twice for rheumatoid arthritis, but both times the result came back negative. It was not until his rheumatologist retired and he got a new one that he was properly diagnosed with rheumatoid arthritis based on the skeletal changes in his hands. It turns out that the RA factor does not always show positive with RA: there is a serum-negative version. Unfortunately, by the time he was correctly diagnosed and treated, there was extensive joint damage. PMR is normally a time-limited condition, but his symptoms had gone on years without resolving. Because he was by then over 90, I attributed the chronicity to age. I wish now I had been more aggressive in seeking answers. Even good doctors make mistakes.
78
Fungi doctors will be the future medical speciality.
Blastomyosis thrives in the north woods of WI.
I have had an infected sinus for over 40 years which I have not id'd the cause, could be blasto, could be fungal form of our body's candida. I have used clove essential oil directly on the infected sinus without clearing it, so I use herbals daily.
Sugar consumption leads to morning back pain. I am 72, walk daily as I have no car.
27
@katesisco
Last summer, my GP suggested that I might try reducing the amount of cows' milk I was imbibing. I was surprised but tried it and after cutting it out altogether my chronic sinusitis has disappeared. I have since learnt that those who are not of European descent tend to develop lactose intolerance around puberty but for some reason we "white" people do not. Some of us do develop it but not until old age sets in (I am 76).
6
@GinaSwifte
There is absolutely no correlation between your purported lactose intolerance and sinusitis. Your entire letter makes no medical sense at all.
5
@GinaSwifte
I am of European descent and I suffer from lactose intolerance, so I suggest that your statement regarding "white" people is incorrect.
As a retired neurologist, I know that the medical stories conveyed by others are often not what actually happened. I truly hope that the soonest appointment was not "weeks" for increasing number of pulmonary nodules without a diagnosis (fungal, Tbc or malignancy). I practiced years ago, so perhaps things have changed. But, when elderly patients start thinking of suicide because of medical issues, this qualifies as an emergency in any era.
405
The day before my husband died from "cardiac arrest" he was diagnosed by his new GP with Hasimoto's syndrome, a low-thyroid condition. He had been having increasing joint pain, starting in his knee, then moving to more and more joints, over the previous few years and was seeing a rheumatologist who prescribed prednisone which helped for a short while. He was also seeing his cardiologist regularly, in addition to a vascular specialist, and his previous GP. No one picked up this condition until his new GP, who amazingly himself suffered from the condition and recognized the symptoms. The treatment was simple--replacement hormones which he was to begin the next morning. He never made it. One of the other symptoms of Hashimoto's is sudden cardiac arrest. Since my husband did have an underlying heart condition I will never know if his life could have been prolonged had this condition been diagnosed earlier, but I do know it would have saved him years of unnecessary pain.
161
@theresa It's important to note that Hashimoto's is not JUST a low thyroid condition, it is an autoimmune disease where your body attacks the thyroid.
Most doctors know to test for both TSH, T4 and T3, those who don't do that as a part of annual physicals on anyone with tiredness, various pains as a symptom are derelict. Your first doctor(s) did not do a thorough analysis of his joint pain. Small comfort to you now, and I'm sorry this happened to you and your husband.
While I'm not a doctor (master's in microbiology), I've found that EVERYONE needs to learn to advocate for themselves, as our fractured medical system isn't the best.
The continuity of practice between GP/Internist & specialists, is just not best for the patient, as one will only look at their area. It's exceptionally difficult to find a good GP because doctors who become GPs are the ones who are poorest in medical skills and richest in bedside manner, IMO (here in FLA where good doctors are nigh impossible to find).
Do not be fooled by bedside manner, look at the doctor's medical skills, not his social skills. Persevere, and this is very hard for the sick patient, they need to have an advocate.
"Hashimoto's disease is a condition in which your immune system attacks your thyroid, a small gland at the base of your neck below your Adam's apple. ... Inflammation from Hashimoto's disease, also known as chronic lymphocytic thyroiditis, often leads to an underactive thyroid gland (hypothyroidism)."
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A fungus is not a "bug." A fungus (plural: fungi or funguses) is any member of the group of eukaryotic organisms that includes microorganisms such as yeasts and molds, as well as the more familiar mushrooms. These organisms are classified as a kingdom, fungi, which is separate from the other eukaryotic life kingdoms of plants and animals.
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@Kuhlsue
Not formally perhaps, but "bug" is often used for various illnesses, most not associated with that particular kind of insect.
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@Kuhlsue:
Recently fungal fossils have been unearthed and dated at about 430 million years ago! Fungi are thus among the oldest of earth's inhabitants. In addition, we know they have soil circles that can be miles in diameter, and ingesting some of their spores may cause incredible and rare illnesses. We could use a map of fungal species to accompany radon maps. No human should live where such things can ruin one's life.
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@drbobsolomon, No question that fungus are among us.
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My wife developed PMR a number of years ago. Responded well to low dose prednisone (5 mg a day). However, she continued with low grade aching and lethargy. Our primary care doctor noted that her calcium gradually increased and became elevated. She checked her parathormone level and it was elevated also. Referral to an endocrine specialist took about a week and she in turn referred us to a surgeon for surgery on her parathyroid glands. She turned out to have parathyroid hyperplasia rather than an adenoma. To make a long story short, her aches were gone when she awoke from the anesthesia. Over the ensuing months, she has been weaned off the prednisone completely. It has been almost two years now and the generalized aching remains absent.
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Elevated calcium levels led to more blood work; either it's hyperparathyroidism or "something you've never heard of called malignant melanoma". I'd heard of it. I watched my father die from it, after a year and a half of weeping screaming pain, while on self-administered morphine.
Pass the laws so everyone, everywhere can be in charge of his/her own death.
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One detail that struck me when I was reading this history was the fact that this patient, obviously with enough means to see multiple doctors, was unable to get in to see a specialist for many weeks, but was fortunate enough to have a doctor who could call in a favor.
The reason I'm remarking on this is because you hear so many people opposed to national healthcare saying that in countries like Canada or Britain you have inordinate wait times for important appointments and medical procedures. Just another excuse.
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Need to point out that this patient, at age 69, was most likely on Medicare.
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@Nancy
I guess long wait times do happen in Canada and Britain too. But I also have read, right here in the Times every so often, how the waiting and rationing of care elsewhere is largely an exaggeration promoted by interests that oppose 'socialized' medicine (similar to 'death panels' and such).
My own feeling is that in the US, I have to be constantly vigilant and assertive to get the healthcare I need. Question, demand, learn, appeal, request help, keep meticulous records, do things that cost extra, read the health news, take time off work, and more. I'm lucky I've been able to do such things, so far. The less fortunate are at the mercy of the system. In this light, it looks like a more centralized, standardized, less fragmented, simpler patient-facing healthcare system would be far better.
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@99Percent I believe that most of the long waiting times that sometimes occur here in Canada are for elective surgeries or non-urgent cases. I have never heard of an urgent case , such as this gentleman, having to wait an unacceptable time.
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PMR can also be followed by another difficult to diagnose condition called Giant Cell Arteritis. Symptoms are mainly excruciating headache and sometimes jaw pain. My husband had PMR and then 7 years later developed what was finally, after 3 months of agony, diagnosed as GCA. Super high doses of prednisone are required with a gradual tapering over a period of about 2 yrs. Both conditions are horrible and compounded by the fact that many doctors don’t know what they are being presented with. What is really frightening is that left untreated GCA can result in irreversible damage to the eyes.
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Geez, these stories scare the wits out of me!
All that’s missing while you tell the tale is the campfire and the scary noises in the woods.
I do appreciate the medical info, but I’m the kind of person who can’t read a medical book without thinking I have every disease in it. These stories also make me appreciate how very very fortunate I am to be healthy today.
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@Ker - that goes for most of us, I think. We just learn that we need to ask more questions.
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@Ker I wish this environment had a laugh emoticon, because your comments made me laugh.
I agree, we are all like that, but as you grow older, you will find that every ache or pain isn't cancer, and every chest pain isn't a heart attack. (sometimes its a muscle spasm, or perhaps a panic attack). But if you have a pain that feels like your chest is being crushed or radiates down your arm... get thee to the ER.
It's difficult to learn how to tell the difference, and when it's important to get treatment, but education is our best way to understand our bodies.
Remember most people die of either cancer or heart problems (about 50/50). So take steps to live healthy and know your risks (genetic and environmental).
It's hard for some of us to maintain proper weight and exercise enough, but, you will feel better if you can do both of those two things!! (and not smoke, of course).
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This piece is a classic example of physicians practicing good medicine, which happens most the time. My one criticism, though, is once the CT result showed abnormalities in the lungs, suspicious of either cancer or infection, waiting 3 months was unacceptable for another CT. A biopsy should have been ordered and performed by the appropriate specialist, particularly since the patient had a history of smoking. In those 3 months, even knowing the correct diagnosis now that it was not cancer, the infection could have spread to other vital organs and caused permanent damage, such as to the patient's heart valves, brain and kidneys. Thankfully, all ended well.
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@Lu
Actually that is completely incorrect. In fact it is exactly the right thing to do to wait 8-12 weeks to repeat a chest CT in this situation, as the vast majority of abnormalities like this are infectious/inflammatory and resolve spontaneously. Indeed, as mentioned in the article, the kinetics of radiographic change are an important part of the diagnostic algorithm. Obviously there are times when we immediately biopsy lesions depending on the clinical context, but it would be completely inappropriate to do so blindly for every CT abnormality.
- a pulmonologist
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@Lu
I have found that (even with Medicare and expensive private insurance as secondary) care is VERY different than before that 65th birthday. "Wait three weeks and make an appointment" seems to be the first "intervention" even for suspected cancer.
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@RC, MD PhD
In this case the clinical context was severe, intractable unexplained pain. It's not like the original scan was just screening as part of a routine physical. I agree with Lu.
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The sort of medical mystery I am interested in reading about, and hope never to encounter!
But I think lung infections might be yet one more potential consequence of increasing heat and less predictable weather create better conditions for certain types of agents to thrive.
Fungi are ( to my mind) utterly fascinating in their myriad forms, and how they can take hold, in the soil, a home and the body.
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I had it when I was 55, very typical presentation with pain and stiffness in shoulders and hips, worse during periods of inactivity. I would awaken at night unable to move from the pain. The first blood test showed only slightly elevated CRP so my doc did nothing. (About 1 in 5 with PMR have normal labs.) I googled and found PMR which I’d never heard of. Went to a rheumatologist who put me on prednisone and I felt better in hours. Took it for 15 month until I weaned off. Still in remission, thankfully.
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I never encountered this disorder in the thirty nine years I practiced medicine until I acquired it myself. Son of a gun. It went from annoying to debilitating in forty eight hours. I literally was on my way to a wheel chair. I barely could get in and out of a car. My C reactive protein level, a marker of inflammation was in the sixties, about 58 points above normal. Given the acuity of the illness I thought I would be dead in a few days. I
saw a very bright rheumatologist who told me what I had after taking a brief history. I took a generous but not excessive dose of methylprednisilone and was asymptomatic within
24 hours. Amazing. I stayed on steroids for three
to four months, long enough to put on 20 pounds
of middlefat and round out my face. I’ve had a few flares. I retired and I’ve stayed off the steroids, for the most part. I work hard but carefully to remain active and retain my flexibility because after all who wants to squander the golden years.
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Wow.
Another great medical whodunit - thanks.
I recently read a similar scary situation.
A man got infected with sinus infection from his wife - it was a slightly more serious infection but basically a bad cold.
I don't know all medical terms but this infection started acting on his muscles in his arm - giving similar excruciating pain.
It was so bad that docs thought it might have to be amputated.
But once the underlying infection was identified and treated - like this man - ditto with this man's arm.
All went back to normal.
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@Neil, what was the infection and how did they figure it out?
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@Neil, that was the man who presented with compartment syndrome, had emergency fasciotomy, and then it was discovered that he, in fact, had necrotizing fasciitis. The bugs they found were identical to the ones that caused his wife’s strep throat. The oddest part of that story was that he had no cuts or scrapes on his arms.
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@Jk
It was a strep infection. The inflammation stopped blood flow in the arm resulting in a “compartmented” condition. But the family had a friend who was a specialist and said that if prescription painkillers were not touching the pain, get thee to the ER. He was in 8 days and had 4 surgeries. Maybe it was an article in WaPo.
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