My husband diagnosed with MS in 2020. Had one small lesion in the frontal part of his brain and another small one on his pons. Symptoms that led to this were numbness of whole left side of his body. Bloodwork, MRIs, spinal tap. Dr kept asking my husband if he ever had a bad virus of some sort. Mono was one thing he had. Nothing else that we know of. He went on glatiramer acetate injections for the MS. 5 months later shooting pain in his upper left side of jaw and face. Dr said Trigeminal Nueralgia. No compression of nerve. He said secondary to MS. Put on carbamazepine and developed hyponatremia. Any medication he takes seems to help for a bit and then becomes less effective and he has to switch. The facial pain is intense and almost seizure like in nature. Missed 5 weeks of work in 21 and 22 due to this pain resurfacing and tried nerve blocks, but they made it worse. It was awful. Our third neurologist really tried to address the pain and it’s the most controlled it has been. Always a shadow pain though and things like constant wind on his face bothers it but nothing like brushing teeth or eating or talking. And then it just hurts and it isn’t related to any triggers like with classic TN.
Then went to another neurologist and he didn’t think he had MS after seeing MRIs. He sent him for a PET scan to check for neurosarcoidosis but negative. The fellow doctor didn’t think enough evidence to support MS, but after PET scan the main doctor stuck with MS since there was no inflammation. Now he wants him to go to a neurologist specializing in headache pain. He has tried this before and it was unbearable for him on headache type medications until he went back on mediation to address nerve pain. I’m so confused.
He takes Topiramate, Vimpat, Amitriptyline, Lexapro. Recently got himself off Pregabalin. Still takes Glatiramer injections for MS but soon switching to Abagio. Has right leg and right hand difficulties. He is only 50 and we have four children. He became severely depressed and anxious with this facial pain. I can’t find anyone that has presented like him with his pain. I feel if I could, then maybe this would make more sense. They just keep saying facial pain is commonly caused by MS.
Has anyone had a test to see if there is demyelination of nerves that would cause this pain? Do MRIs show this?
Has anyone switched from Glatiramer injections to Abagio?
Does anyone else have only 2 lesions and increased O bands and been diagnosed with MS?
Does anyone have a lesion on their pons with MS?
Has anyone experienced terrible one sided facial pain with their MS?
I have been on MS society and no one has had a similar conversation experience.

Jump to this post