Reply To: CIP/CIDP symptoms worsening from IVIG
Thank you David!
It is very good to hear your story and it helps me understand the whole situation much better.
I have also read your story here:
I learn the following:
You seem to have taken an active role in your treatment and not only relied on your doctor.
Ultimately this lead to your recovery.
It seems important to find the right Dr. who believes and supports a patient with his suggestions.
It is good for CIDP sufferers to read about other peoples stories since it tells us more than our doctors tell us.
It is inspiring to hear that you can work out again and you seem to be getting back into your old shape.
For myself I cannot recommend to go back to physical exercise too early since it has caused relapses for me on a number of occasions.
Before the start of my CIDP I was about 55 and working out 4 hours a day, cardio and weights. This all stopped from one day to the next when I did not have the energy anymore.
I had buzzing and twitching muscles in my left leg with minor coordination issues on he left side and was diagnosed with peripheral neuropathy, also had nerve conduction test done showing some damage. I stopped drinking alcohol, started eating less carbs and took “Piracetam” and vitamin B. For 6 months was almost symptom free until I felt so good and went back to the gym. After one week I felt the progression of the neuropathy setting in again.
I had to stop all exercising or sports activity now almost 3 years ago.
Ever since, when I feel really good and start doing more physical work the neuropathy now diagnosed as CIDP is flaring up badly.
Someone getting back to his old routines is blessed however, one must individually find his own limits.
I would also throw this question out there:
How are extreme physical exercise or burnouts related to the occurrence or relapses of CIDP???
I have read about anecdotal evidence that it could be related in some cases.