Anyone with Fibro and MS?

Discussion in 'Fibromyalgia Main Forum' started by mamafrey1, Mar 23, 2003.

  1. mamafrey1

    mamafrey1 New Member

    Hello again everyone, well now my dr. thinks i am early stages of MS. My neurologist when i first went and discribed my symptoms said it sounded like MS. The MRI was negative except a small spot on the brain they are going to watch. So i am in limbo of what the neurologist thinks and my reg. dr. The neurologist came to the conclusion all these weird neurological symptoms are due to the Fibro. Who knows. Now my Fibro dr. says probably in 5 years it will be full blown. Anyways, I have had cheek pain and facial numbness for over a month now. Let alone the dizzines, off balance, nausea, tremours in my left hand and leg. If it is the MS how long do these last? They put me on neurotin 2X day, zanzflex and antrivert so far. But i still have the cheek pain and numbness. Yesterday evening my hands felt like rubber bands and my fingers where clinched up. When i would straighten them out it felt like extending a rubberband. Let alone my brain turns cold and lower back spasms. Does anyone else have any of these symptoms? Any replies would be appreciated. Have a good one. mamafrey
  2. kimmer

    kimmer New Member

    Hello..
    Yes, I have all the same symptoms that you have. I have been telling the doctors for years. I finally went to a new Nero and she said that it sounds like MS to her. I had a MRI on Tuesday, but no results in yet. The wait is killing me. Do you suffer from Migrain headaches often? This is something new to me. I have had the numbness and dizziness for at least 5 years. Tremors in left leg and hand, also. I don't go back to see her for 6 weeks. I've been DX with FM and CFS for 5-6 years. Good luck to you. KIM
  3. Combatmedic

    Combatmedic New Member

    The neuro you are seeing seems quite knowledgeable. My neuro has said mostly the same thing. Has your neuro diagnosed Trigeminal Neuralgia (excrutiating shock like pain in the nerves in your face)? My neuro seems to think that this is more of an indicator than any other thing. I have one 7 mm lesion, in the corpus callosum, which is a key place for MS lesions. I'm 25 years old. The SSER (somatosensory evoked response) test showed nerve damage, which the neuro said is consistant with the lesion in my brain. I have NO reflex in my right ankle, and nerve damage in the leg. (I have fibro to, so, I have nerve pain in BOTH legs, as well as the lower back!)
    Of all things though, he is most concerned with the trigeminal neuralgia, and despite having NO reflex in the right ankle, the other reflexes are all hyper.
    I had a spinal tap done last Tuesday, and another MRI of the brain with contrast, and another EEG. I will find out the results on April 10th.
    My neuro is very kind, and up-front about things, and he said that these things (meaning MS basically) can drag out for years. He said people are very sick, and they don't know why, things may not show up on tests for many years. I'm glad that he has never doubted me, never blown my symptoms off, and he is very thorough. He will order any test, without another thought, when he thinks it's necessary. I just had an EEG and an MRI four months ago, with the C-spine MRI, ENG, and SSER, but due to the most recent flare of numbness, tingling, etc, he felt it necessary to do more tests now, rather than wait it out until the six month mark to repeat the MRI.

    Sorry you are going through this, but it sounds like you have a good and knowledgeable neuro, so hang on to him/her. It is very important, since you will more than likely be seeing each other for a while. To me, it makes all the difference in the world, in my emotional state, to have a doctor who is competent, kind, caring, and smart. I feel very safe, and comfortable with my neuro, even if someday we end up with a positive diagnosis, of MS, I'd rather hear it from him than some of these JERKS I've been to.

    Good luck to you, and hang in there.

    You're definitely not alone. There is another lady on this board, who has had MS for 20+yrs (I believe) and has also recently been diagnosed with FMS.

    Medic
  4. dhcpolwnk

    dhcpolwnk New Member

    I was diagnosed with MS in 1978 and much more recently (August 2002) with fibromyalgia. Both are weird conditions, and I often find it difficult to figure out what is responsible for which problem. It's very important, though, to find out if you have MS. If you get a confirmed diagnosis of relapsing/remitting MS, you probably should be starting one of the MS drugs (Avonex, Betaseron, Copaxone or Rebif) in order to reduce the number and frequency of attacks but even more important, to reduce the accumulation of disability.

    I'd be grateful that your neuro recognizes the importance--and possible overlap--of fibromyalgia symptoms. My neuro didn't even want to talk about the fibro.

    It does sound to me--as somebody else already has said--as if you have trigeminal neuralgia. I think that would account for your cheek pain. I know that trigeminal neuralgia is not uncommon in MS. I'm really sorry to hear you have that, as I understan the pain can be particularly bad. If you have MS, maybe this is an exacerbation that will go away. Exacerbations can last for 6 weeks to two months, then go into remission. (Although I haven't experienced trigeminal neuralgia, I had numbness on my right side many years ago that went into remission. I've also had double vision, optic neuritis and other symtoms that went into remission.)

    As for the MRIs, my first MRI (in 1985) showed only a few tiny spots. However, my most recent MRIs show "extensive white matter disease," according to the written report by the radiologist. Also, some MRIs look only for white lesions (T2, I think). If they use the right contrast medium, they also can check for dark (T1 ?) lesions, which I understand are more likely to correspond with clinical symptoms. So if your MRI didn't check for the so-called dark lesions, it may not reflect what's really going on in your body.

    (I attended a very good program last year that explained all this, and somewhere, I have a handout that included most of the slides shown at the meeting, including some that talked about this. Unfortunately, right now, I can't find it. So I'm doing the best I can from memory.)

    In any case, I'm sorry you're having to deal with all this, and I wish you well. I've been trying to find out whether there is any research about MS and fibromyalgia. If I find out anything, I'll post it on this board.

    --Laura R.M.

  5. karen_dean

    karen_dean New Member

    I recently just found out about this site..and I have gone through what you have for years mama..I have had 2 mri's..first one had shown small spot..and I carried basically the same symptoms as yourself..at that time the Drs. told me I would have to wait 12 months for another mri..so second showed then another spot ..so to make a long story short..the specialist I had told me that there was a chance of demyelation,but to my shocking surprise..once again they said there wasn't enough proof after the mri was re-read..so out of pure frustration, mental anguish, I demanded to get another opinion..so off to another Dr. (out of town)..seen four different Drs.with different testing..and examinations..and this is when I found out in Jan.I have fibro & CFS I hope this helps..keep pushing the dr.s for repeats on mri's & 2nd opinions..Take care, Karen
  6. shannonrn

    shannonrn New Member

    I just wanted to know that I was in the same situation as you are right now and all I can say is don't fall for it. I have 2 lesions on brain but they're not typical MS lesions and my neuro was convinced I was going to have full blown MS within 5 years. Every 6 months I would get MRI's of my spinal cord and brain and nothing new would pop up but still my neuro kept saying it's coming. I got myselg so worried and sick that I was going to develop MS that for 5 years I cried non stop. At the end of 5 years he told me I didn't have MS but he didn't know what I had. Those 5 years I sat and worried and cried for nothing. I had to go to the Mayo Clinic in Rochestor for them to tell me it was fibro all of those years. Fibro can have a lot of neuro symptoms with it. Also do a search here on brain lesions and you will see how many FM/CFS sufferers have lesions on their brain. Keep you chin up and don't do the needless worrying like I did.