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jocelynrenee jocelynrenee 2

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??

8 Replies

  • jule44 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.

     

  • Sasha8101 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.

    • jocelynrenee jocelynrenee Sasha8101

      Hi Sasha,

      Can I ask what led to your lumbar puncture? I am trying to avoid that procedure as I heard for many people it is terribly painful. Also, I'd like to know what your lumbar puncture experience was like and how your results came out.

      Thanks for the reply.

      Jocelyn

    • Sasha8101 Sasha8101 jocelynrenee

      Hi Jocelyn

      My neurologist sent me for a lumbar puncture and a visual eye potential test because it's all part of putting the pieces of the diagnosis puzzle in place.

      The eye test tests to see whether there is damage to the optic nerve. Happily my test shows no sign of demyekubatiob

    • Sasha8101 Sasha8101

      Sorry that posted too soon by accident...

      Meant to say no signs of demyelination.

      I was very nervous before the lumbar puncture, as, no doubt like you, I'd read a lot of conflicting reports about the pain and the side effects. In the event, it really was a breeze if I'm honest and the anticipation was worse than the event itself. I had a chat with the doctor beforehand to set my mind at rest and go through the procedure. I then lay curled up on one side and she felt my spine to identify where to put the needle. She then anaesthetised the area so that when she inserted the needle to withdraw the spinal fluid, I couldn't feel much at all. I knew the needle was going in, but it certainly didn't hurt. I lay there for about 20 minutes while she extracted 5 phials of fluid. We chatted while she was doing it and it was over before I knew it.

      To avoid the headache it helps to drink a cup of coffee immediately afterwards (for the caffeine apparently). I then lay there on my back for about 3/4 hour just to relax and then got up and travelled home on public transport. No headaches or anything.

      I haven't had all the results yet, but first results apparently suggest MS in the spinal fluid (oglioconal bands).

      I'm very glad I had it done, because it's all part of reaching an informed diagnosis and the more tests the better as far as I'm concerned. As I say, I haven't had all the test results yet but we'll see.

      How are you getting on?

  • charlotte20311 charlotte20311 jocelynrenee

    Jocelyn Renee

    i also have MS and TN attacks on the right and left. The MS has a slow escalating discomfort and debilitation. I'm in a secondary progressive stage. The slow aspect of it means there is an opportunity to find a way to work with it even manage it. The TN is so different! The sudden bursts of excruciating pain, it feels like fragmented lightening. At least it only lasts a few seconds at a time. My variety anyway.

    i was diagnosed with MS in 1999 but the TN wasn't diagnosed until 2015. The first 'attack' of the MS was a numbness on the right side of my scalp, maybe a precursser of the TN to come

  • charlotte20311 charlotte20311 jocelynrenee

    (I'm struggling to hold this site, he seems breaks in my message) 

    (not sure where I had got to!)

    my current attack ( hoping it will pass) is on the left. The first time it was on the right.

    i live in the U.K. And was born in Scotland in March following a bad winter, so my mother saw very little sunshine during her pregnancy. 

    One thing that helps is trying to relax during the pain, not easy! I have a theory that this is a stress reaction that my body has got few outlets to display.

    enough! It's been great to write to you. I wonder how you are now? This is a lot to live with.

    Charlotte

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