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Trigemminal Neuralgia

Posted , 3 users are following.

sally90
sally90

Is there anyone else who has this awful condition who also suffers from MS?

0 likes, 3 replies

3 Replies

  • Bobburrito
    Bobburrito

    Posted

    I have had TN for a long time and now the doctors are testing me for MS and myasthenia gravis. I have developed some difficulties that I never had before. I see that you posted this a long time ago. Are you still interested in talking about how the MS is effecting your disease? I'm trying to see what it would be like if I reall have MS. Things were bad enough already. I live in the US and the health system may treat things differently but people are all the same.

    Have a nice day.

  • sally90
    sally90

    Posted

    Hi Bobburrito,

    I am very interested in your email. I was diagnosed with MS 12 years ago but had had problems for several years

    The TN came on about 5 years ago but I could generally cope with it. Early this year it changed to being unbearable. I felt as if I had a live electric wire in the left side of my mouth. I ended up in hospital with dehydration as I could not drink, eat or speak. It is at present under control with drugs. Unfortunately the drugs are epileptic drugs, as with MS the nervious system is not working correctly the drugs do not help MS. I am considerably weaker when taking TN drugs. My TN is caused by an MS plaque on the Trigeminal Nerve. I belive only 2% of people with MS have TN. I am in a wheel chair but manage fairly well, I can stand and move a little with crutches. I do not know what myasthenia gravis is - am about to look it up. I will be intouch again.

    Look forward to hearing from you. Do hope you do not have MS - Its a rotten condition but effects everyone differently. Sally

  • alicot
    alicot

    Posted

    I might have MS but do have TN. and there are surgeries they can do whether you have MS or not. I had a radial frequency thermal surgery where they burn the effected nerve into submission...the TN pain is gone, I am off of drugs and have my life back. In the US they want to keep you drugged but there are five or six surgeries available. Find the TN experienced surgeon in your area and get the help you deserve to have. You have to be your own advocate with this condition because there is a lot of ignorance. Don't allow yourself to suffer because of this ignorance.
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