Reply To: Physical Therapy

April 26, 2017 at 5:53 pm

Hi to all. Let me start by admitting that cidp is different for everyone but I am looking for some input/advice on my status if you are so kind to share. I am at 5 months since my first symptoms began, horrible thigh pain and soreness followed by being tazzered by my nerves. 4 months of infusions every 2 weeks. I saw my neurologist in early April and after strength, sensory and balance tests in his office he stated that I was doing great which caught me by surprise as I thought I was declining. So after this amount of time and 7 infusions I am left with these thoughts/questions:

1. My legs feel like they have cratered. Thigh muscles are sore and inflamed most days with brief respites of normalcy. Still walking fine, no balance issues.
2. Nerve activity is mainly in lower legs but occasional pings in some upper regions like a shoulder or wrist. Not much but have never had upper body issues.
3. Was on 2400mgs of Gralise but now trying Lyrica. The transition has not been fun but getting better. Concerns on Lyrica?
4. No noticeable improvement after infusion, no bump as some have described. Are they still working? Gammunex-C/Gammaked.
5. Many have described knowing when the disease has somewhat abated. When did that happen for you if indeed it did?
6. Neuro interested in spreading out infusions while I am wondering if my cidp is just very slow moving and would Plasmaexchange be better.
7. Psyiotherapy. What is possible? What was recommended for you? Luckily I live in a warm climate (Texas) and our pools will be opening soon so I know that will be a good way to exercise sore muscles.

Anyway, if you have a few spare minutes I would love to hear your benchmarks or milestones. I recently reread the original copy of the explanation of cidp and it was a reminder of how much is still unknown about our affliction but also how important the mental attitude is when going through this. Hope many of you are doing well. Bryan F, how are you doing?