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Trigeminal Neuralgia and MS

Posted , 4 users are following.

sally90
sally90

Hi, I have had TN for at least 12, years and I also have MS.  All the drugs for TN work against MS.  I have had Gamma Knife Radiosurgery.  Slightly different pain, can't eat, difficulty drinking, talking especially on the phone! but not so much electric pain just a constant one.

I have progressive MS, am in a wheelchair.  Once I take any drugs I cannot move at all.  Would love to find someone else with both these conditions.

I recommend 'TN Association UK' for information.  Very useful to show to friends, family and work to help them understand this awful condition. 

1 like, 3 replies

3 Replies

  • metsfanLisa
    metsfanLisa sally90

    Posted

    Hi Sally!  I too have TN and MS, although I am not as advanced as you are with the MS.  What kind of drugs have you taken?  Did you take the Tegretol?  My neurologist also started me on Vimpat, but I stopped it because I had a bad episode and started other drugs.  I hope you find something!
  • paul49262
    paul49262 sally90

    Posted

    Hello Sally

    My daughter has recently in the past 6 weeks been diagnosed with TN at the young age of 20,

    we are still waiting for the neurologist appointment so interested to hear what they are going to advise.

    to be honest the TN is a bad enough condition but you also have the MS to deal with as well.

    keep being positive and I hope they can offer you some relief soon.

    Stay on the forum and stay in touch.

    All the best to you Paul

  • alicot
    alicot sally90

    Posted

    I have both too!  

    I get Radiofrequency surgery which works! But doesn't last more than a few years.

    my mental state is my biggest concern...how to live with it?

    good ideas are welcomed!

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