Reply To: Progress so far towards recovery

July 1, 2017 at 5:58 pm

Hi Bryan, Jeff here in Houston. Always interested in how you are doing as we were diagnosed around the same time. Sounds like some positive things for you are happening with your current treatment. I see my neurologist in early July for my 6 month elvauation. I have been doing ok to pretty good. Same as you my calfs and random numbness in feet are the main issues. I have experienced some increased inflammation in the thighs recently but nothing too bad. I have had luck with taking Lyrica so my nerve pain in my lower legs is pretty subdued. I take 3 pills a day (75 mgs) and have absolutely no side effects. I am still working everyday and sleeping good. I have had ivig infusions every 2 weeks since being diagnosed (gammaked). Sometimes I get a boost after the 3 hour infusion but most of the time I do not notice much difference. So, not sure what that means and what the neuro will say. I have not looked into physical therapy yet due to the time commitment and cost, but I am sure it would benefit my muscles. Good days and not so good is my case as well. My balance is still good but will be curious to see how I do with the neuros strength tests. I have read there are 3 kinds of cidp and I think I have the “slow progressive” version. I had not had any upper limb issues for months but now have some minor inflammation in my forearms and some numbness in finger tips but comes and goes quickly. Will that progress?, who knows. I have gotten used to my condition and accepted that it is what it is but compared to others, I am doing pretty good so far. I have also read that the disease is most active from 1-3 years. Have you read that? And that after the active time period of the disease you then know what you are left to deal with and that relapses are possible. I always say that there is no expected course for everyone as cidp is so individual but I still want to know what others are experiencing and after if I can clean some expectation of what the future holds for me. Keep posting your updates and hope that you find something other than the cymbalta that helps. I am very lucky with the Lyrica.