No diagnosis yet!!!!!

Bones, joints and muscles
1

Just got a call from my Rheumatologist's office. Because my ESR, CRP, and all other blood tests he's run are normal I guess he doesn't feel I need a Rheumatologist. Unfortunately I still have all the symptoms that appeared right after I tore my rotator cuff! I saw an Endocrinologist she ran about 10 blood tests ( I don't have the results yet) and gave a bit of prednisone to get me through a vacation I had planned.I've been using it sparingly because I don't have another MD appointment for 10 days. I will say it definitely helps, I was able to go away without pain.I haven't used it for awhile and have pain in my hips, thighs, and behind my knees. My symptoms also are similar to lupus symptoms and other really scary stuff. I'm a total "mess" over this.

Sorry this post is so "scattered", I'm jus at a loss . Help!

 

2

Bert, well from the symptoms you describe and if, as you say, the steroids definitely helped but the pain has returned when stopping them, that does seem to point to a diagnosis of Polymyalgia.  If your rheumatologist is discounting PMR simply because your ESR and CRP blood tests are normal, then you need a different rheumatologist!  Approaching a quarter of patients with PMR never have raised blood test markers. You need to get in touch with your Dr to see if s/he can hurry along the results of your tests, explain your response to the steroids and request a further supply.  Around 15mg is the usual recommended daily starting dose for PMR, at which dose you can expect to receive about 70% relief in your pain within a few days or even hours.  If it turns out to be something other than PMR that requires different treatment, then the steroids can safely be tapered and stopped during these early days.  Good luck.

 

3

Bert, that is EXACTLY what happined to me @ 52.

Torn rotator cuff, 2-4 weeks later PMR. Except then, for many reasons, it went undiagnosed, and the PMR went into remission 8 months after 3 orhto surgeries (both shoulders and 1 knee). I was essentially disabled for a year, but the PMR was not as bad as it's last visit 12 years later. (I'm 65).

In 2013,  My rheumatologist denied my "inflamation" because my CRP and ESR were high-normal. Said come back in 3 months. Suffered for 8 weeks. Self diagnosed after reading about lupus, fibromyagia, etc. to the point where I went back to my primary and asked for a week of prednisone. He said only the rheumatologist could prescribe in the plan I was on. I told him that I was coming in to the clinic, and I would "plop myself down in the waiting room and would not move without a trial dose of Prednisone". Told him he would have to call an ambulance.

He gave it to me, 15 mg/day... miraculous.

 One month later, PMR diagnosis confirmed by Head of rheumatology @ Mayo Clinic.

You will find that delayed PMR  diagnosis is very common, more the rule than the exception.

I believe that more often than not PMR is precipatated by a traumatic event, physical or mental. You can read my profile or personal posting to get more info, or ask if you'de like.

Good luck bert, there are some very knowledgeable people here  on this forum. If you have PMR, you have found the best resource!

4

Bert, FYI, about 1 year later, down to 5 mg a day, and able to do some physical work again. 

5

dare I suggest writing down a diary of events. Onset and changes in all symptoms of anything, what medication taken when, what activity when and after effects, any changes in your behaviour, doctor / rheumatologist / endocrinologist visits, test results, and anything else vaguely relevant. Hopefully things will become less scattered and more clarified for everyone.

Interesting discussion about internet health and medical support forums with long time friend yesterday. Prostate cancer. He's ok now. He stopped looking at internet as it was more scary than helpful. I totally understood.

Diagnosis is a skill which needs experience to hone. Self diagnosis is extremely difficult for many reasons.

6

I don't understand physicians who don't treat the patient but treat the lab results!!! To me they are just plain stupid!! Sorry but that happened to me as well.

7

Julian,

I could not agree with you more. I would never diagnose  anyone else. Here in the States,  the ignorance of PMR is astounding. Over the last year, on 2 separate occasions, when seeing new ortho  and primary care ( I am moving to medicare from the VA&#160 and mentioning that I have PMR, the physicians said: " And when you refer to PMR you mean.......??"

However, when left to my own resources, and limited options due to insurance and fiscal constraints, I feel it incumbent upon me to be the proactive patient who actively seeks knowledge. And Remedy.

During that 8 weeks of misery, I had lost hope. I have described my tequila experience in the "PMR and Alcohol" thread that I started here in this forum, and through that experience with tequila, I KNEW that the inflamation that I had was treatable. So 2 weeks of research later, I petition the primary.

Here in the States, we may not have the option to skip-hop to another rheumatologist, depending on our insurance plans. And if that rheumatologist adamantly states that "you do not have inflamation!!" and they are our sole medical provider, should we not persist and try other options?

One of the diagnostic tests for PMR is to try low dose and short term pred. If there is the miracle, then there lies another clue to potential PMR indicator.

Here in the US there is a proliferation of "white coat syndrome," where the physicians are often  loathe to reconsider their assessment when questioned. Especially with a somewhat uncommon malady like PMR. When they fail to  make a diagnosis based soley on low inflamatory markers in blood tests, with accompanying physical symptoms which are indicative of PMR, the injustice is to the patient.

Prednisone is a perscription drug which requires a physician's approval. We both agreed that it would be a short term and trial dose. But had I not been adament, I would have suffered a month more, or longer.

So how to "help" those who are at wit's end and in suffering, except to encourage their efforts to try again to get an answer!

 In my case, I had to act. I could not continue to live that way.

Julian, I admire your articulate analysis and extraordinary literary talent. I mean no offense by this reply.

8

no offense taken.

There were two parts to my post. One was the diary. The second was caution about self diagnosis and the role of forums helping some people towards their wit's end.

"Its difficult" is not the same as "its impossible".

Writing the diary, methodically, is the more important by far. That's why it was first. That's the bit that may help those who are at wit's end. Just a suggestion that may help Bert. Its not the only way.

It helps put things in perspective, and it gives the medical professional a more firm base for a diagnosis. It changes the discussion between medical professional and patient. It helps avoid the after consultation thought of "bother, I should have mentioned ...". It helps achieve consistency across several medical professionals. Its part of trying to get a different answer. Something about doing the same thing and expecting a different outcome comes to mind. So try a different approach. Its just one of many.

The bit about forums and diagnosis is really about being objective when writing the diary. To not let the diary be coloured by other people's experiences. To avoid the potential trap of letting internet and forum have a role in being driven to wit's end.

The bit about "white coat syndrome" is interesting. I see the Asian bit of "saving face" which is not really considered a part of Western cultures but is nevertheless very prevalent. A diary is one way of allowing the white coat to save face instead of maintaining entrenched position. There are of course other ways. None of this stuff is black and white.

Confrontation works sometimes. Other times not. We make judgements about the people we are confronting and how we behave. A different doctor may have handed you the phone to call your own ambulance rather than handing you a prescription for steroids. And in different circumstances I've blocked the exit from a ward until an arrogant consultant discussed my new born daughter's condition with me (the nurses loved it ...). It seemed appropriate at the time.

I have a big systems background. One of the interesting aspects of experiences described on this forum is that there are bigger differences between countries than there are between individuals when treated. From my humble perspective there are serious systemic problems within health services which are different in different countries. And that's on top of the significant cultural differences. Hence, different people in different countries work their system differently. Probably save that for another day.

9

If you have symptoms of PMR (or something) and pred does work well then you DO need a rheumatologist if you have normal blood tests if a GP cannot/will not do the job. If it is PMR it will come under the "atypical" label - one in five patients with PMR have no raised ESR or CRP and a rheumatologist should be aware of that. As Judy says, he is just treating the figures not the patient who is in front of him. If you have the option, go to a different rheumy.

In the UK a GP is perfectly at liberty to prescribe pred for suspected PMR and the "Bristol paper", the link for which you will find in the first post of the link below, was written to aid PCPs in diagnosing and managing PMR:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Surely a PCP can use pred off their own initiative? The suggestions of a diary are good. Perhaps write a letter to the rheumy explaining how it is affecting your day-to-day life might help? One lady did find that made a considerable difference in how her GP responded to her limitations.

"Here in the States, we may not have the option to skip-hop to another rheumatologist, depending on our insurance plans" - I've had this suspicion - but I repeatedly see assertions from US contributors that your system does allow for easy changes from one doctor to another and choice. In the UK it is possible to change but it is hard work! However - obviously the UK system is better in that the basic drug for PMR can be given by a GP! 

10

My doctor is treating mr for PMR and so far so good, i can talk to her and discuss things, should i be seeing a rheumatologist, i do keep a diary for her.

11

I was replying to Bert - who is in the USA and needs a rheumatologist to make the diagnosis because of the system there. Everyone is different and everyone has a slightly different scenario. What applies to one doesn't always apply to others.

You are in the UK - and as I said, GPs are perfectly capable and able to provide the prescriptions we need for pred. Unless there are problems and something isn't working well then in the UK we do not necessarily need to seen by a rheumatologist. If it is a complicated diagnosis, yes. It is is simple and straightforward, no.

So since your GP is doing a good job and is discussing things with you that's fine.

12

Thank you, my doctor and i are learning from you all, and she does not mind me asking her questions regarding PMR she said on the last visit you should be sat in my chair, i said no all i know is from the forum and all the ladies on it. She thinks its wonderful that i can talk to people who are in the same boat, so to speak.

13

I am in the US. Agree that PMR is rarely recognized by docs, at least in my case. Although in hindsight they agreed. 

Got the first PMR symptoms September 2013, after getting a Baker's Cyst on August 4, behind my right knee, after rowing for more than 2 hours or so in a cramped position (stupidly). The cyst ruptured and the PMR symptoms appeared. I went to my internist 3 times. She ran blood tests to rule out Lyme, RA and other possible diseases. I went to the orthopedist about 3 or 4 times, who treated the Bake's cyst, which had caused edema in my lower leg after it ruptured. He was unable to diagnose the PMR pain and stiffness as he was so focused on the knee. I took so much Ibuprofen for the pain that I got a bleeding stomach. I went to a rheumatologist, who determined (wrongly) that I had PMR and prescribed 700 mg of Gabapentin. He also did a battery of tests, which showed an elevated CRP and anemia (from the bleeding) and told me to take Tylenol. He gave me a cortisone injection to the wrist as I had a frozen and swollen middle finger and could not bend it at all. (It helped that). He also sent me to a different orthopedist, who gave me shot of cortisone into the knee (for the cyst) and miraculously, all the PMR pain went away (for about 2 days). I went back to the internist for the stomach pain and enemia, and also to a digestive disease doc for an endoscopy, which showed bleeding. He put me on a diet and prescribed Pantoprazole, which helped the stomach. The PMR got worse and the pain moved to my wrists and knees and I could still barely walk or sit, or get up, etc, etc. and certainly was unable to get out of the bathtub, my husband was helping me to get up off the toilet and out of the bed. I decided that there was no way I had fibromyalgia as the symptoms did not match. I made an appoinment at Johns Hopkins' geriatric center (but had a long wait) and also searched the internet for another rheumatologist that was on my health plan from work. I found a person and made an appointment. Quite by chance, I saw PMR written on her web page as one of the diseases she treated. Having never heard of it, I clicked on it and BINGO! There were the symptoms I had been having for 3 months, described in BW. I was elated. The appointment with her was amazing. I did not tell her what disease I thought I had, but waited for her to diagnose me. She did that nearly immediately after asking me the symptoms and looking over all the bloodwork done and sent me for more bloodwork, but also prescribed 20 mg of Prednisone and told me to call her a week later and if I felt better and to come back 3 weeks later. Within a few days the symptoms got lighter and within 1 week they were GONE!!! My left shoulder was frozen, but the rheumy prescribed PT and that took care of it. I reduced to 15 mg, then to 12.5 (gradually over the next few months) and am now at 5.5. (I cancelled Johns Hopkins after I saw the new Rheumy and had the diagnosis and successful treatment)

Sorry to be so long winded. My insurance, Blue Cross Blue Shield Advantage (BCBS) allows me to go to any primary doctor or specialist or lab on their list. For a specialist on the list, my out of pocket fee is $35. For a primary care doc it is $25. If I go to someone not on their list, it is quite a bit more. It is my choice what I choose to do. Each insurance company has their own way of doing it and a different list of doctors. Both my internist (primary care physician) and rheumy also accept Medicare (our 'National Health Plan for retirees). As a working person age over 65, Medicare is my hospital insurance, but not for Emergency Room visits or procedures done as an outpatient. The BCBC from work covers those and medical visits: lab work, x rays, doctor visits, specialists, procedures etc. For example, the cataract surgery and checkups are covered by the BCBS plan (I pay a $35 fee for the initial visit, the surgery is covered, but I have a hefty fee to pay for the laser that is being used and the lens itself, which corrects astigmatism and for distance. One eye done and having the next one on Tuesday, June 16. BTW both rheumy and Primary care told me to take 10 mg Prednisone on the day of surgery, 10 the day after and then 7.5 the next day and then back to my 5.5.

Either the primary care or specialists can order bloodwork and prescribe Prednisone.

My primary, when I later told her it was PMR, recognized it and corroborates what my rheumy tells me to do. My orthopedist, whom I saw for a broken or rather shattered shoulder (a fall on the ice 3 months into the PMR treatment!!) told me I had had 'a lot going on' with the knee, so he was focused on that and not PMR symptoms. BTW, he treated the shoulder excellently and is really a good surgeon and ortho. I never went back to the original misdiagnosing rheumy.

My lesson from all of this is that a person has to be persistent and proactive. One must ask questions. The internet is a really good tool, if you use reliable sources, such as NIH or Mayo Clinic or Johns Hopkins.

All the best to all! 

 

14

Hi Bert I keep a very detailed diary of how I feel what meds etc I find it very helpful especially when i have a problem really helpful when reducing pred. I was lucky my Doc nailed yhe diagnosis the first time I went in with the problem This was a minor miracle because she is usually terrible at getting anything right.

15

For awile now I've written in a journal at night, so I've been going  back to check if I've mentioned my aches and pains. I went on vacation on the Prednisone the Endo Dr. gave me and really felt pretty good. I got home cleaned the house and the next day I could hardly move! I never thought I'd crave Prednisone, ha! 

I'm also amazed that the docs I've seen can't seem to think "outside the box", to them there are no gray areas.

16

Yes, Paula. We agree that awareness of PMR in USA is low and share that diagnosis and treatment is oftentimes an uphill battle against ignorance.

Rowing machine or shell?

Good luck

17

Hi Bert sorry to hear of your troubles I find this is a lot of trial and error that is why my journal has become so important .My rhuemy jist said take this then reduce 1 mg a month.that is to fast I am using Eileens method.Hope you feel better