Peripheral Nerve Hyperexcitability (PNH) Community
Orphan getting worse
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This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.

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Orphan getting worse

I am classed as an Orphan, with many symptoms much like CIDP.  Had this for 12 years after trip to 3rd world country.  Only true help for it was 23 IVigs, day hospital treatments, but body began to not respond after 3 years. it began to make me ill-- once into shock so they were stopped.

Question 1:  Should I try IVig again?  My neurologist is against it, but it alone has given me periods of remission. It has been 4 years since last IVig.

Question 2:  Disease is marked by slow loss of movement to the point of no movement; toes, ankles, legs, arms, neck.  Arms recently attached. I no longer can raise them more than 40 degree angle. I am very upset as now putting on a coat or shirt is difficult and painful.  What to do?
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215164_tn?1269469840
I want to make sure I am reading your post right....You have symptoms like CIDP but no firm diagnosis?  If it is CIDP there are other methods of treatment like plasma exchange and corticosteroids if the IVIG is making you sick.

LG
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