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TN and MS - typical and atypical pain

I am 31 years old and was diagnosed with TN when I was 29. At the time, my neurologist tested me for many things, with a primay focus on Lyme Disease as I was living in the American Northeast. He didn't bring up MS, which was a huge oversight.

I started with a new GP after moving to the American Northwest, who asked if I had been screened for MS, and immediately ordered an MRI. If you are not aware, TN at a young age is highly correlated with MS. It's extremely rare for someone my age to get it. I also fit all the other criteria for MS in terms of genetics, location of upbringing, sex, etc. and have some other symptoms I didn't realize could be related.

My first MRI showed one significant lesion large enough to be MS, and tons of smaller ones. I have another MRI in a couple months to look for progression and check other areas, as well as looking for another possible cause for the TN.

I am wondering if anyone else has MS and TN, and if anyone else has both kinds of TN. I get it on both sides, not at the same time. I also sometimes get the stabbing random "typical" pain, but most often get a gradual build up to a debilitating constant agonizing pain that can last for weeks without medication. The "atypical" kind. Gabapentin helps me with that, but doesn't really help with the stabbing kind. I am allergic to carbamazepine, so I can't take that.

Anyone have similar presentation? It's got to be something neurological due to having both kinds on both sides... right??

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  • jule44 jocelynrenee

    Hi Jocelyn

    So sorry to hear you have MS and TN. 

    I have Atypical TN but not Ms. 

    If you don't get any replies here I would suggest going to the Living with Facial Pain site as there are a few who have both Ms and Tn there so they might help you there.


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  • Sasha8101 jocelynrenee

    Hi Jocelyn Renee

    I have TN and probable MS due to demelyenation. I've had an MRI and the multiple lesions were due to demelyenation (which can cause TN and MS). I'm just waiting for the results of my lumbar puncture. I only get TN on my left side and it's the classic stabbing type. I'm really sorry you've got it on both sides.

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