Mayo clinic
Posted , 9 users are following.
I live in Connecticut but have a son who lives in Minneapolis so I have considered going to the Mayo clinic as they are rated at the top in the USA.
I have been dealing with this since February 2019. Because I was experiencing neurolgical symptoms, such as ataxia, movement disorder and failing simple testing they were looking for brain abnormalities. All MRI'S were normal so I was told it was stress related and nothing was wrong neurologically. In the meantime my symptoms are getting worse , unable to raise my arms , extreme shoulder and arm pain , then pain in legs started. I was housebound and unable to dress myself, cook, clean etc.
Finally I saw a rheumatologist who diagnosed PMR. I started on 20 mg of prednisone and saw immediate results. AFTER 3weeks I went to 15 mg. That did not last long as symptoms increased and CRP and sed rate were elevated. put on 60 mg of prednisone and had biopsy for GCA . I was on the 60 mg for 5 days before the biopsy so I am not sure if that is why it showed no inflammation at the time. I am on 20 mg now but inflammatory markers remain elevated.
iI have been told that PMR does not cause balance issues but I feel mine is connected somehow. I just don't know whether to see a rheumatologist or neurologist if I made an appointment at the MAYO clinic. Also not sure if from prednisone but now have hypoimmuneglobunine amemia. should I see infectious disease DR or immunologist?
0 likes, 9 replies
karenjaninaz Grandmaann
Posted
i live in NJ. I AM PLEASED WITH MY LOCAL RHEUMATOLOGIST., IT is common to have an anemia with PMR which resolves with prednisone. If you think your case is more complex you can try Hospital fir SPECIAL Surgery in New York City where they do rheumatological research.
I am a retired nurse-anesthetist and am particular about my doctors.
Anhaga Grandmaann
Posted
I can't find the name of your anemia online. Are you sure this is the spelling as there are a couple of similar names to be found?
Lots of people can feel more clumsy and off balance with PMR.
I think you should ask to see a blood specialist regarding that form of anemia.
As for PMR treatment, too rapid tapering at the behest of a doctor is probably the most common cause of flares and a need for a higher dose. Sixty for PMR was over the top, although not for GCA if you had exhibited GCA symptoms. In the absence of GCA you would probably have done fine with returning to your starting dose for a few weeks, then tapering much more slowly in much smaller steps. Yes, negative biopsies are very common and even more so after some time on pred. The advantage of a positive biopsy is that in the future no one can argue about the diagnosis, but a negative one, as you know, doesn't mean you don't have GCA.
1951grumpa Grandmaann
Posted
Grandma... The rheumatology dept. at Mayo Clinic in Rochester requires a referral. Several years ago while out there with my wife I went to that department and asked about seeing a rheumatologist and was told I need a refersl for this department.
EileenH Grandmaann
Posted
Whoever told you PMR doesn't cause balance issues is wrong. Part of it is muscular in origin I think - our legs just don't do what we want them to. But ear and balance issues are common in GCA - and you can have GCA without it showing on a biopsy.
I suspect you mean you have this:
https://en.wikipedia.org/wiki/Hypogammaglobulinemia
https://www.healthline.com/health/hypogammaglobulinemia
I suspect you would start with a rheumatoloist of haematologist.
Grandmaann EileenH
Posted
Yes you are right it is hypogammaglobulinemia, my immune system is compromized from the prednisone.
EileenH Grandmaann
Posted
It might not be the pred - it might be the autoimmune part of PMR spreading its wings! It can and does cause other a/i disorders.
jo66120 Grandmaann
Posted
Hi, my husbands PMR started very slowely. First came the balance issues so we went to a neurlogist, nothing wrong, then he did balance therapy, really helped, then the pain started in his rightl hip so he was sent to therapy, the therapist told him that his muclesl were like knots and so she would work to un-knot them and he continued along this way for awhile. HE saw his GP and he was no help so time passed, he suffered and finally one day we scrolled the Internet and thought he had PMR. He was referred to a Rheumatologist, given lots of blood work and put on 15mg. of prednisone and lo and behold the pain begain to go away. But he still has trouble walking, he says its like your legs dont want to do what you want. His balance is not bad but if he turns to quickly he can fall. This has been going on about a year or so. Now we have another problem called " Grovers disease" This is a rash that is extremely itchy, it also starts slowely, up on the shoulders , back and front, spreads down to the waist, top of arms. Its another mysterious rash, they can tell you what they think CAN cause it but have no solution as to how to treat it except with steriod creams. They say it may go away within a year. Anybody else with PMR have this problem?
Biggles81 jo66120
Posted
I also had a balance problem which I put down to getting older, your description relating to the difficulty of turning and finding that your legs seem to have a mind of their own resonates with me, as do the itching although it starts around the ankles and moves up to the calves.
I find that the pain in the shoulder and elbow is worse in the side I have been sleeping on, I have tried sleeping on my back but inevitably I wake to find myself on my side, it is worst first thing in the morning, it lessens as the day goes on. I take two paracetamol when I wake up and 4 milligrams of prednisolone and then manage the pain. The specialist warned that too much steroid weakens bones and is not good for you generally. I am trying to keep my dosage low by hot shower in the morning and gentle exercise. It is very frustrating too realise that the medical profession does not know what causes what appears a widespread condition.
Grandmaann
Posted
Thank you for the information about balance issues. The Dr insist PMR does not cause balance issues but I know it happened at the same time as my illness.