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trigeminal neuralgia or ms???

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looloo43
looloo43

Hi. Has anyone been originally diagnosed with trigeminal neuralgia but went on to find/be diagnosed with have multiple sclerosis?

I was diagnosed with trigeminal neuralgia by my gp in sept 2017 following constant unresponsive headache for 3wks, facial, skull,neck & shoulder pain neuralgic in nature. i was put on carbamazepine which quickly made the headaches better within 1st week, but i was left with random facial/skull/neck pain & constant shoulder pain that felt just like shingles. my gp gradually increased the dose of carbamazepine over last few months, & i also take amitripylline. this helped, but the constant shoulder pain like shingles remained but not as painful. i have recently been on a short course of prednisolone steroids the last 2.5wks to calm a mild-moderate colitis flare starting on 25mg day. this has calmed the  colitis down but incredibly ELIMINATED the nerve pain in my shoulder that is supposedly trigeminal neuralgia after just 1wk of 25mg day.  2.5wks after starting the steroids i am now on my 4th day of 10mg pred(have to gradually taper down) & tonight i can feel the shoulder nerve pain returning. its leading me to think it could possibly be ms as i had such a quick & dramatic response to steroids & trigeminal neuralgia is not an inflammatory condition as far as i know...... I have also had trouble with the large gluteal muscle in my right leg/hip being tight & contracted last couple of years & now thinking that could be another pointer to ms.  any comments/thoughts/experience on here welcomed.  thankyou x

0 likes, 2 replies

2 Replies

  • tina12594
    tina12594 looloo43

    Posted

    I have the same symptoms. I am tence from my shoulders to the too of my head. I feel like I'm inside a balloon or something. I have been seeing my chiropractor for 2 weeks now and worry that it's making me worse. I havnt been to a specialist to be diagnosed yet. I just don't know where to start. Some people say I have tmj. I'm 36 so a little young for TN but several are much younger than me with it.

  • vicki78970
    vicki78970 looloo43

    Posted

    I am so glad you are getting relief with some of the meds. I have found that Steroids relieve the pain of TN but only temporarily. As soon as you try to get off them the pain comes back.

    I don't like the side effects of the drugs. I use them at night but during the day I go natural.

    I take L Carnatine,Turmeric (buy them both through Puritan's Pride. Buy 1 get 2 free) I also take glucosimine. (I buy at the Dollar Tree) The combo takes the pain away & makes life A lot better.. 

     I would see a neurologist so they can do the tests. 

    I'm not in the medical field but I am dealing with TN.

    I did go to my Chiropractor. He adjusted me, did e stem & ultra sound. 

    It did help. 

    I hope this helps you get rid of some of your pain!)

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