A couple of months ago I posted looking for some help for my daughter, who had a variety of symptoms. Some MSish and others not. She first started showing symptoms three and half years ago, and I had been to doctor after doctor without getting anywhere on a diagnosis. With each new doctor it was one of three things: run a bunch of tests and see if anything sticks or refer to yet another doctor or send signals to me it was all in her head.
She was in chronic pain and in my heart I knew something just was not right. I took her to a psychiatrist, who was pretty sure she had somatoform disorder--I prevailed on her to not write it down anywhere and she got very testy when I questioned the dx because surely if that was the case she would have gotten better after a year of psychiatric visits and instead she was visibly getting worse week by week.
We burned through so many doctors, including 9 neurologists. It was difficult, and there were weeks long stretches where I just gave up on taking any next steps to pursue a diagnosis. But then I would get back into it because as a mother I could just never forgive myself if I accepted what so many medical professionals were telling me--this was all psychological--and it turned out she actually had a medical problem. The kind people of this forum encouraged me to keep pursuing.
Last week, we went to a rheumatologist, our fiftieth doctor in the last three and half years. Quite unexpectedly, we walked out with a diagnosis. It is not a particularly good one--autoimmune spinal arthritis (spondyloarthritis)--but the rheumatologist is very confident in his dx. Indeed, his subtext was that for him it was a pretty obvious one. He did this the old fashioned way: a thorough medical history (no forms for him, he did it from scratch) followed by a twenty to twenty-five minute physical exam. (I don't think any of the previous doctors spent more than 5 minutes on an exam.) He ordered just four blood tests and an X-Ray. Her CRP is quite high (34), showing inflammation, making him even more positive.
Her disease is a progressive, lifelong one, but there is treatment and the doctor is hopeful he can get her to place where the inflammation is reduced and she can start going to college. We are no longer in Limbo Land, and it is very freeing to know I no longer have to carefully study and plot for a next move in diagnosis.
Thank you all for your kindness to the mother of someone who likely did not have MS but to whom you nonetheless took an interest and provided much needed encouragement to continue on despite advice from medical professionals that continuing to see doctors and pursue a diagnosis was merely feeding the psychological illness.
You are the best!