M.S. how many more out there

Discussion in 'Fibromyalgia Main Forum' started by karen_dean, Jan 11, 2007.

  1. karen_dean

    karen_dean New Member

    have also been given this answer. After four years, many test and finally a second MRI((this time with dye injection))..I was given the news on Dec. 20..."Merry Christmas" to me. I havn't been able to cope really well yet, but in my heart I knew something different than FM & CFS. I'm struggling to get my self together, and accepting the news. Just wondering how many more out there have ended up with the same answer as myself. I would really appreciate your feedback.

    Thank you & Blessings

    Karen
    [This Message was Edited on 01/11/2007]
  2. abcanada

    abcanada New Member

    I've had the same kind of feeling, as I've gotten progressively sicker over the past 2 years. Just had a regular MRI & things looked good. I was wondering if you had a regular(no dye) MRI that was normal as well? The other thing I suspect is Lupus, which did not show in blood either. I understand it can take quite awhile for things to appear in your blood work. I'm a young mom of 4 beautiful kids & am desperate for answers, although I maintain I don't want the wrong answers. I'll probably just have to be patient until what ever it is decides to show itself. I'm sorry you have to deal with this, but it must be a little relief to know exactly what is causing your problems. I wish you the best & hope now that you know whats going on are able to control your progression. Take care, Laura
  3. rinaldo

    rinaldo New Member

    What was diferent on your mri. I had one and they found a few spot on my motor skills Want me to get Spinal .But i will not until i have more info
  4. Aeronsmom

    Aeronsmom New Member

    I have M.S. I am considered the early stages right now, but my optic neuritis has had me in so much pain, and the tingling is also not the greatest, but I think for me not being able to feel my left foot touch the floor when I walk is the annoying thing and this really affects my walking as well as my balance, I am constantly falling down. I was dx June 2005 after everyone telling me "it's all in your head" Dr's including.

    Love to all, Ann
  5. karen_dean

    karen_dean New Member

    To answer a few questions about "how" I finally got my diagnoses..my MRI from previous showed more dyemylation, and along with this my motor skills had become more severe. I am in the early stages...and I have heard and will be starting a higher dose of Vit. D, as it has been reported for M.S.
    The stress factor as mentioned is highly involved with disease..I have taken this really hard..and being on my own, I have been suffering with high anxiety..and of course bouts of depression..I hate taking drugs..as for now I am just taking my clonazapam for the anxiety etc (which I have been taking for some time now)..I hate feeling this way..I have high sensitivty to drugs, and am afraid to try any new drugs.Dr. sent Rx -- Risperdal..but it's still sitting in the package. I pray every day for strength to get out of this rut I'm in. Plz pray for me...being by myself is the worst feeling in world.

    Blessings to all
    Karen
  6. that it was "most likely" and "probable" etc.

    I still don't totally believe it's accurate, or maybe I'm in remission of sorts finally, after yrs of non-stop "somethings ALWAYS wrong" symptoms.

    I just saw my neuro yesterday for the first time in over 2.5 yrs, going for another MRI & also an MRA(aneurysms in family), and an EEG the following monday (twitches, jerks, & intention tremor)..

    I don't know, I always felt there was something more wrong, as well, especially in the most severe symptom yrs, it backed off last yr, but, once they said "MS" on my very first MRI, I wasn't suprised, upset,.....nothing really...nor was my mom, she simply, quietly said "I've always thought that. You're way sicker than me" (has FM/diabetes, etc also)

    I have some positive tests, including MRI, and others, also positive clinical exams (whatever that means, pffft!) but--I have 2 tiny lesions, stable on MRI for nearly 3-4 yrs, in fact, one actually shrank by 5mm...so, I don't know, I guess I just don't much care.... I was 26 at the age of diagnosis (actually, younger, 26 is when it was "put on paper"...I'd been told for yrs though, so like I said, I guess I just knew already, and had adjusted...

    I've always said the pain from FM (and-trigeminal neuralgia-MS) is worse than my MS symptoms, hands down---OTHER than, SOME muscle spasms, and the spasticity in my legs...

    Don't get me wrong, I haven't enjoyed bouts of falling, repeatedly, using a wheelchair for a cpl yrs, for ANY store I went to, and depending on a quad cane for over a year & a half, but....I don't use those anymore...and I DID fall, off our deck christmas eve, but....anyone could do that..

    I dunno, I DO know optic neuritis sucks, and is very painful, and I'm really glad to have never had it, though I've had 2 SHORT (hrs) bouts of left eye blindness..

    I know you're bummed, and I'm really sorry you have MS, but, the only treatment I've ever gone on was glutathione, IV, 3 times a week, for 6 months, the rest, is treated just like FM/CFS, symptomatically...

    Hugs to you, I know people who've been dx'd on X-mas DAY over the phone, some on their own Birthdays, valentines day, etc...It adds a little bit of the "bummer" factor, I know.

    I was dx'd just before mother's day, with my dear mom with me at the neurosurgeons office...*shrug*

    You'll adjust, the thing is to be very informed, but NOT AFRAID. That takes a long time, and even depends on symptoms/severity, but, I am friends with a 64 yr old woman, who has been a quadraplegic for the past 19 yrs, had ms for 29 yrs, and she's one of the happiest, upbeat people I have ever met, but, she does suffer from anxiety/panic attacks....(who wouldn't??)

    Just know you're not alone, even on an FM board, with MS.

    Take care,

    Laura M
  7. winsomme

    winsomme New Member

    i have seen neurologists. i think that most of us with CFS get referred to them at some point in out travels because our symptoms are very similar to MS

    i would say that one of my best appts was with a neurologist that specializes in MS. he believes that i need to be monitiored for possible MS and took all my symptoms very seriously.

    one thing to keep in mind is that many people with CFS do have abnormalities on MRI that can be indicative of MS. and also we don't really know that there is no link between MS and CFS. for all we know, they are variations of the same disease.

    if you look at the HHV6 foundation website you will see that there is as much research into to a link between MS and HHV6 as there is for CFS.

    I don't have any answers here, but i think it is important that we keep asking questions.

    thanks
    bill