Okay, I've been in the ms world for the past 2.5 years. I had just had bladder surgery for urinary problem that I believed were from having children and getting older. I was reading a book with my feet up when I noticed that both feet felt like I had cut the circulation off. Thinking it would go away, I didn't get too upset. Well it didn't go away and my world completely changed.
Long story short, after 8 MRIs, a lumbar puncture, all of the evoked potentials, nerve conduction studies,and numerous neurological exams, I was bounced from doctor to doctor. I finally got to the ms clinic at Johns Hopkins in Baltimore. I had at least 9 lesions on my brain MRI and all of the other tests were negative. I should also tell you that my blood was tested for all of the possible viruses, vitamin issues, infections by several doctors and it all came up that I did not have anything.
My Johns Hopkins neurologist dx me with PPMS. My symptoms have progressed, but I still can walk. The numbness in my feet has moved up my legs to my knees, I have banding tightness around my abdomen, and my head and around my teeth gets tight. I have shooting pains in my lower jaw. The fatigue is unbearable and I stopped working. I just saw a urologist and now have to cath ever 4 hours due to inability to feel the "urge" and empty my bladder. I am also having trouble with balance and my shoulders and arms are really weak.
I was recommended to participate in clinical trials for PPMS by my neurologist at NIH. After getting the entire work-up again, the NIH team could not give me a PPMS dx because there were no lesions in my spine. So what should I do next?
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MS or Post Viral?.