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Fumbling in the US for a "diagnosis"

Posted , 10 users are following.

pamela19292
pamela19292

Cross posted -  I am new and I am sorry if I am doing this wrong - I responded to a message on a board about the age of diagnosis (<50) of PMR ..  . probably better starting my own thread . . .

 For the past 6 months I have had a moderately elevated CRP level and ESR, pain and stiffness in hips, feet, neck and sometimes elbows - some days it is hard for me to get down the stairs in the morning and I am frequently tired.  I have been tested for Lyme, RA, Hashimotos, Lupus and Vascultis and menopause (all my ovarian function was tested).  Thyroid has been tested several times.   GP sent me to a rheumy.  The rheumy he referred to retired. Found one through insurance who did a CBC, ANCA Panel and UA  (all totally normal) and told me there was no rheumatological reason for my elevations and to get a chest, abdominal and pelvic CT to rule out malignancy and a pair of Birkenstocks.  My ESR was in the 49-55 range (so not terribly elevated - CRP 9-10) (tested three times) and my CBC and UA was totally and completely normal.  Anyhow, I just turned 46 and he told me I can't have PMR because I am not 50.   My GP initially suspected PMR (found out after I shared my CT referral)  and I am now seeking a consult at Johns Hopkins before I undergo the CT. Besides the notion of a screening for malignancy being scary - the CT seems sort of unnecessary at this point - given the fact that I show no other signs of malignancy at this point. It is very frustrating and I can't help but to think that the percentage chance of me having PMR, despite my age, is greater than the chance of having an underlying malignancy. I am just concerned I am going to have to deal with this for the next four years UGH!  How much damage does the actual inflammation do to your body in the long term?  I am not even sure Hopkins will see me - you have to send your records before you can get an appointment.  GP said he is not comfortable diagnosing me because he does not see enough PMR cases.  Sorry for the rambling - just wanted to share with people who may have been through this.

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  • kup47
    kup47 pamela19292

    Posted

    You found a excellent information source here. I to am rather new, however I have been diagnosed and confirmed as having both PMR, and GCA. GCA being the worst. I was just released from the hopital after a flair yesterday. I can only share what I have been told from my personal experience. Yes,some Dr's will like to run many test just to rule out all possiblities. Unfortunately this does delay treatment or relief. Age and test result should be based on age group but they are not. Elevated blood test for  AC1, ERYTHROCYTE SED RATE and C-REACTIVE PROTEIN are huge indicators of PMR, and GCA. (Swelling of small arteries in the body) Now let us back up a bit, PMR can progress to GCA. Sometimes Rhuem Speaclist like to do a biopsy of the temporal artery before confirming GCA, however if they start you on steriod medication, which is Prednisone, they will not due to getting a false test result. If they believe you have GCA, most will start the steriod immediately as the health hazards are high for loosing vision and having a stroke. The biggest mistake I am finding in my treatment is that they, my rhuem. specialist did not start my steriod at a high enough dose, nor for long enough before reducing. PMR nor GCA involve the joints, however people can have seperate issues such as artheritis of the joints. I like you, simply due to the horrific debilitation and limiting pain am very concerned my Dr's were missing something like bone cancer. Simply because I have been having so many terrible flairs. John Hopkins is excellent, you are fortunate to have that resource. I have Mayo, but alas short on support and info, which is why I also found this site. 

  • Quiz_Girl
    Quiz_Girl pamela19292

    Posted

    I was first diagnosed with PMR when I was 48, it lasted for about three years and then disappeared only to return when I was 63. I am now 68 and have been on Prednisolone for 5 years.   My friends son was diagnosed with PMR when he was 45 years old. I feel that the patients know more about Polymyalgia than the Doctors.
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