Originally Posted by Susanne C.

I did not have the Athena panel run, so cannot give you the exact CMT variant. Dr. Arnaudo pegged me as a probable for hereditary neuropathy from the beginning, based on my odd gait, high arches, clumsy and uncoordinated childhood, etc. Also my EMG/NCS was abnormal and you do not usually get that with SFN alone. She sent me to Dr. Choudhry at Hopkins for a second opinion. I had the skin biopsy which showed advanced SFN, ( I have little or no sensation to above my knees and it is moving up.) and another EMG/NCS which confirmed the first. The final report was moderate to severe small and large fiber neuropathies with muscle deterioration. I cannot move the toes or front of my left foot, and I experience pain when I try to move my right. My arms and legs "fall asleep" several times each day ( and night). My feet and ankles are visibly wasting.

Hopkins offered to do a spinal tap, the Athena panel, to go as far as I wanted, but both neurologists said there was no treatment for what I have, and seemed to think I was making the best decision to just accept it and seek palliative care.
I did later realize that my birth father's family have definite severe cases, and my 27 year old son has it as well, so that pretty well confirms CMT.

IVIG will not help CMT, so if it does help you, it is probably something else. My understanding is that it helps demylinating neuropathies. Mine is primarily axonal, but as the nerves rot it all runs together.

You may want to return to Hopkins to see a neuropathy specialist, although it can be frustrating and sometimes fruitless to pursue a diagnosis. All you can do sometimes is treat the symptoms.

Look up books on chronic illness and chronic pain. I have found several of them to be very helpful. I did not have a career to give up, so I have not dealt with that loss, but I did have to stop being super mom and give up most of my intricate needlework, skills I spent many years perfecting. There is a lot of grieving with this illness, and new losses all the time.