Rhombo myeloneuropathy

Posted by markwroberts @markwroberts, Jul 26, 2020

I was just diagnosed with Diffuse nervous system disorder affecting trigeminal nerve, spinal cord, nerve root, and peripheral nerve, with an autoimmune cause, with pain as the principal manifestation 2. NIF-IgGs (neurofilament heavy chain) positive. I'm told that this is really rare, is there anyone out there who has something similar?

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Hi @markwroberts, Can you share with me a little more about your diagnosis. There doesn't seem to be any information on the subject so it does indeed look to be rare. When were you diagnosed with this and what was the treatment options from your physician?


Basically as I understand it, my immune system is attacking the nerves in my brain stem, spine, nerve roots and all of my peripheral nerves (short fiber, long fiber, motor and autonomic. I'm starting high dose (1000 mg) infusions, 3 times next week and then once a week for 11 more weeks. First w2eek of September I start cyclophosphamide (1 gram/meter squared) monthly for 6 months


@markwroberts That sounds an awful lot like Guillain-Barré Syndrome. Did you doctor suggest that or mention this diagnosis?


They tested me for that and have decided that not quite what I have, hence the funny nondescript name.

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