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?
I have asked all of the questions. They tell me they don't know what to think because it is nothing else. They want me to come back in 6 months and are hoping to see progression. The crazy thing is that my Hopkins doctor was sure it was PPMS. I'm not sure if I should go back to him or not. I hate to start this with yet another neurologist.
You are being seen by some of the best- We hear lots of good things about JH and the NIH teams have extremely high standards.
Sarahsmom (Julie) is being treated through NIH and talks about the strict standards in diagnosing anyone for any disease. They have to be 110% positive in their diagnostic work since they are doing all this research.
Changing to anther neuro is always an option, but starting over at square one would be a drag. If any new symptoms come up before your 6 month wait, be sure to call their offices and report the change.
Sorry I neglected to issue words of welcome to you earlier - I don't remember crossing paths with you before. I hope you will find the information here useful for your needs. We have a few PPMS folks here and perhaps they can help with your questions too!
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