Peripheral nervous system involvement in ADEM

When I became very unwell and my symptoms went to my spine I had nerve pain and this was stinging on my back. So when I leaned back in a chair or my mum came to touch my shoulder to kiss me goodnight It was painful. I did tell one of the neuro's about it but he didn't say much. I have googled stinging nerve pain and it comes up with peripheral neuropathy not central nervous system.

Also my palm of left hand going purple in the shower and tingling, another neuro said is my autonomic nervous system. Autonomic nervous system is part of the peripheral nervous system.

Has anyone else had peripheral nervous system involvement in ADEM? thanks

Hi Hele!

I had ADEM 5.5 years ago. I still have peripheral nerve damage. The 10th cranial nerve was severely damaged on the left side of my face. It has led to slight muscle wasting and sever pain. During flares (which are caused by accidental consumption of gluten or casein) the skin along that nerve is so sensitive that a breeze ruffling my hair is nearly intolerable. My right side still has lingering issues as well. I currently have limited feeling in the outside of my right hand including my fingers which requires concentration to avoid burns and cuts while cooking. I take neurontin, naproxin, and tegretol for pain. I never skip my drugs. On the good side, so long as I am not contaminated by gluten or casein, the pain is minimal and I can manage. On the occasion that I fail to read a label or I eat something someone else cooks, the pain sends me to the narcotics and I spend 3-5 days in bed trying to cope with the overwhelming pain along those damaged nerves. For whatever reason, when the antibodies against those two proteins are activated it irritates the damaged nerves. Try going gluten free to see if it helps.


Hi Deborah, thanks for your reply. I have been gluten, wheat and cows milk free for around 12 months now. I always used to find myself falling asleep after eating white wheat bread. It feels good to have that out my life now. I forgot to mention I also had acute complete transverse myelitis in my arms. Both my arms became very weak rapidly.

I wondered if you or anyone else got transverse myelitis?

I did not have transverse myelitis, but my main ADEM lesion was in the medulla oblongata but did not encompass the full width of the spinal chord. It was initially diagnosed as a grade 3 astrocytoma and I was given a very poor prognosis (like 20 weeks if I was lucky!) I moved (looong story about failure of partner to provide needed support and care), got a new neurologist and he correctly diagnosed the ADEM.

I am much weaker than before, but I go to water aerobics 3-5 times a week and just finished a 40 mile bike ride. I plan another long ride of 66 miles this fall. I do require a companion with me at all times since I never know what will happen next, but that has not been a problem in my new (now 5 years old) home.