12 years, 6 Doctors and still looking


When I began my journey 12 years ago and had you asked me, I wouldn’t have believed that I would have seen a minimum of 6 different specialists with as many diagnosis and still be searching. Yet, here I am getting ready to go to another specialist and my 2nd rheumatologist, in hopes of being able to determine if I have Rheumatoid Arthritis.

This Rheumatoid Arthritis, for the women in my family, is more of trying the new biological medicines to see if they work rather than passing a test. My mother has the auto-immune disorder and will fail any RA blood test tried. This may seem unusual but it’s my understanding that a certain percentage of folks who have the disease simply do not have the blood factor indicators that are tested. And, frankly, medical science is still in its infancy for the auto immune disorders. As with Fibromyalgia, a RA diagnosis is a matter of ruling out everything else and less about passing a test.

For me, the sad fact is that my pain is getting worse. Interestingly, the problem areas are my joints, my neck, rotator cuffs, elbows and wrists in particular. My neck is getting what a football player would call a “stinger” and my joints feel like there is a hot, thick liquid that has stinging bees in it. It’s a very strange sensation. My hope is that I can get my pain managed, because right now it surely isn’t. If this is Fibro, it should be under control. Deductive reasoning from that statement alone is an indicator that there is something other than, or in addition to, Fibro.

Hopefully, your Fibro is under control. If it isn’t, don’t be afraid to challenge your doctors. If one isn’t giving you the answers you deserve, try another. The doctors are so busy being doctors that they sometimes forget they don’t know everything and don’t have the answers to everything.

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1 Comments ↓

One Comment on “12 years, 6 Doctors and still looking”

  1. Tessa July 29, 2014 at 6:14 AM #

    You sound just like me and what I am going through now. I just changed Rheumatologists, but he seems less understanding. My pain sounds a lot like yours and I just had the rheumatoid arthritis test and it was negative and I have been told that this can happen for years and years and you can still have it. They are also bringing up Lyme’s Disease again. I had the tics and a swollen red spot around them, but it was a year later before they tested for it and it was negative, but I have been told that is another test that can be negative when you have it. They won’t treat without a positive test and it has been years now and long term Lymes causes the same symptoms as Fibro. Good luck to you!

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