I am wondering how the doctors can tell that you don't have CDIP vs ALS?
No, they have never mentioned it, except for before all the myasthenia panles came back negative inlcuding the MUSK test. I do have quite brisk reflexes according to gp and neuro. I also have what-I don't know what I'd call it, but when I am sitting on a bleacher and the kid behind me stomps his feet on the wood, it makes me jerk with each "stomp"? This symptom happens in many other situations as well and only since my onset of initial symptoms. Several years ago
I got viral arthrits two times after an intial infection (strep throat, etc) then after that cleared- my joints wer so bad I was unable to walk. High dose steroid cleared both of these up in a matter of days. My neuro or GP don't seem to bat an eyelash when I told them that. Seemed important to me.
Laurel- how did they identify the CIDP in your husband? I hope he is is improving and I hope you are right in many new treatments coming soon!~!~!
Hi Robert,Cindy - Thank you for the background and information.
Laurel - Thank you again for more regarding CIPD
I guess something just struck me about Laurel's comments about the rarer offshoot her husband suffers from, and how even with CIPD different treatments may need to be tried. When I was early into this and naive, part of me just wanted my doctor to hit me with "something".
Even now I sometimes wish a doctor would try something: antibiotics, anti-virals, or immunosupressants to see if there is a difference. My rational side reminds me that these treatments have real side effects, and that good medicine (ie I don't have a medical degree...) requires justification equal to the risk.
Quirky mood tonight... I'm going to blame our impending cold snap.