Diagnosis of MMN
by: Imran Khan, |JULY 29, 2020
We just wanted to thank you for putting us in touch with Ashar Hasan. He was able to help us find a doctor in town and get us an appointment with him the next day. We went to the doctor and he actually told us the minute he saw my husband that he doesn't have ALS and the reasons he said that. Those just happen to be the reasons that we have never believe that it was ALS -- just never knew what it could be until we just happened on CIDP by accident. He told us that Tom would most like respond to CIDP and even went so far as to tell us that we should probably buy a Bow Flex machine. Tom is starting IVIg today and we are praying that it will help him. It's been a long journey since he started getting sick and are looking forward to seeing signs of improvement.
Hope you have a great day.
B.M Hi Ashar & Mark,
I just wanted to let you know that Dr. Jain has actually changed my husband's diagnosis from ALS to CIDP because of his response to the IVIg treatment. We saw a response to the treatment the first day and have been seeing subtle responses every day since then. He is still not able to raise his arms or legs but he can flex the muscles and is basically stronger than before. He is also having an easier time eating and talking and we've been able to lower the settings on the ventilator. We have tried taking him off of the ventilator for a minute at a time and he says he can actually breath on his own. He can't actually take a full breath but we have an appointment with his pulmonologist on Monday to discuss processes for weaning him off of the ventilator.
We were not able to convince our doctors that Tom needed the IVIg treatments even though all we had read had convinced us that he had CIDP. No one would listen to us though until I sent the email to Mark. I just want to thank you both for listening and helping us. We are hopeful now that we will get back to a more normal life soon.
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The simplest treatment for any neuropathy or CIDP is a gluten free diet, 30-40 % disease for reversal. See our celiac section of cidpusa website.