Suspected of M/S now-anyone else told that one

Discussion in 'Fibromyalgia Main Forum' started by MagsFMS, Dec 29, 2005.

  1. MagsFMS

    MagsFMS New Member

    I was told by my family Dr. to get a brain MRI (he never agreed with FMS. I did and now I have been told that what I really have is M/S. Has anyone else had a MRI of their brain? I am very scared now.magsfms
  2. smiffy79

    smiffy79 New Member

    bring up my thread on mri scans i started it so ppl could 'log' their mri experiances,it didnt really work but a few are detailed.
    many of us here have had scans with ms in mind dont get yourself all wound up over it as it will only serve to aggrevate your condition.
    just breath deep taking it in your stride and deal with it as and when it happens.

    big hugs smiffy
  3. Greenbean7

    Greenbean7 New Member

    I have had several MRI's for different things.

    One was for migraines and they found nothing.

    One was for suspected damage from my seizures.

    One was to see if I had damge from mini strokes.

    Each time I was quite relieved to have them find nothing. Just proves that there is nothing up there!

    What else makes them think you might have MS?

    Hugzz,
    Greenbean
  4. hopeful4

    hopeful4 New Member

    Hi magsfms,
    So sorry that you are going through this, no wonder you're feeling scared. Here's a ((((hug)))) to help you get through this.

    It's true that I don't know much about MS. But I do know that many of us here with CFIDS/FM have been diagnosed and mis-diagnosed with a whole array of illnesses.

    Although I don't know your exact circumstances or symptoms, I urge you to keep on reading and researching on your own. Recently I was diagnosed with Lyme Disease, and am finding that it is the culprit at the bottom of my illness.

    Many people who have been diagnosed with MS later have found that what they really had was Lyme Disease. Once the Lyme was treated, their "MS" symptoms subside.

    So, I'm not saying that you have Lyme, but I am saying that if you have not yet gone to a LLMD (Lyme Literate Medical Doctor) for Lyme testing, I urge you to do so. It requires specialized testing, as many tests are not reliable at all. The diagnosis itself, is a clinical one.

    You can learn more about the subject of Lyme and MS on lymenet.org Many of us on this board are also over on that board!

    Wishing you the best always, and never, ever, give up.
    Hopeful4

  5. darude

    darude New Member

    What other tests did they do? I have a pituitary tumour and 40 tiny foci but Neuro said not ms????????????????
  6. karatelady52

    karatelady52 New Member

    I agree with hopeful4. Check out lymenet dot org. Many people on that forum were diagnosed with MS.

    Remember, MS means white lesions. Lyme disease also can have the white lesions on the brain. Lyme is the great mimicker (is that how you spell it - my lyme brain is fuzzy).

    Sandy
  7. Hello there mags,

    In your title, I notice it says suspected, in your post it already goes to your doctor says 'now i have been told that what i really have is MS'

    First off, big hugs to you, big.....kick in the pants to your doctor, if in fact those were his words to you verbatim.. thumbsdown to him. It is fine absolutely, for him to say, I have never agreed/felt right with your diagnosis of FMS, I feel there is something else going on with you, I would like for you to have a brain MRI done...
    DEFINITELY NOT ALRIGHT TO DIAGNOSE MS WITH NO MRI, NO SPINAL TAP (I am assuming...since, usually MRI is first, then the more invasive procedures..) and other diagnostic tests for MS to go on...and panic or upset you like that.

    There are so many things that go into diagnosing MS, it can take years, sometimes. and sometimes it happens in the ER, for some, in an acute, obvious attack. Though, they are usually, otherwise healthy individuals, and KNOW that something (say...they don't have FMS screwing them up every single day, etc) is wrong with their bodies...

    I am 27, soon to be 28 in about 3 wks, I was diagnosed with fibro 10/01, CFS 01/02, and MS, 5-6-04,(was dx'd with MS, undx'd, redx'd etc, numerous doctors. primary, neuro, 3 neurosurgeons, radiation oncologist-that treated a facial nerve condition that goes with MS sometimes-*no Cancer*, used radiation to deaden the nerve 2 times, after a botched surgery! (didn't want anyone to panic, never had any cancer thank goodness)

    Anyways, I just wanted to say, I have had tons of MRI's, due to the surgery on the facial nerve & other treatments for the condition (trigeminal neuralgia) and, my lesions, have not changed, 2 small ones. It matters to neurologists, *where they are*in the white matter of the brain sometimes, size, shape, your age* etc. History of symptoms (which got my diagnosis with 2 neurosurgeons in Indianapolis, along with test results like ENG, SSER, clinical exam, etc.. (years of "patholigically brisk reflexes" were of concern, neurological vision problems related/caused by MS, other stuff that neuros know are related to MS etc.

    I was hard to diagnose, because* I HAVE MERCURY TOXICITY* but, not to the levels that could cause my *level of disability* and I had to fly to a neurologist that specializes in Parkinsons, stroke, MS, brain injuries, Lyme disease, Heavy Metal Toxicity, etc. in Naples Florida to figure all of that out.. *AND* to be able to avoid nasty harmful treatment, and do things a better...detoxifying way, not the drug companies way. (I live in southern Indiana by the way... but had to do this)
    I flew to the Perlmutter Health Center? Dr David Perlmutter, at the advice of my integrative medicine dr.
    and was able to start glutathione tx I.V. 3x's a week, for MS, and* additional help for the mercury & bismuth toxicity, etc, and tests for Lyme, and celiacs(formerly dx'd with it as well through biopsy).

    When is your MRI scheduled? Do you have one yet? Please let us know, and know you are not alone, and that many of the ppl here have indeed had MRI's done, some have had "clean" MRI's, some have had things show up, still not diagnosed with MS, and... maybe ? a very few* 2 or 3? diagnosed with MS? the moderators may be able to tell you how many true MS diagnosis they have seen in the years they've been here? It's ok though, :) you see me here, still kickin' still fighting for a cure, I have friends on my MS chat, diagnosed with fibro, several of them. It's a double (with cfs *triple*) whammy.

    Hang in there. We're all here for you. Promise.

    aintasgoodasIoncewas, (formerly Combatmedic,) <<I hope that was my full username... It's been a long time since I was last here, back with a new computer. (((Hugs to you all))) P.S. I am amazed at all these Lyme disease posts,

    and I can't remember if I ever posted here, that I tested positive for EBV, systemic Candida, Chlamydia Pneumoniae, Mycoplasma, and HHV-6, doctor treated with Diflucan for Candida, for HHV-6 & EBV--acyclivor(spelled that wrong) then switched to Valtrex..., and for Mycoplasma & Ch. Pneumoniae treated with Doxycycline, but, I've also been on huge doses of Keflex & I.V. antibiotics, been on the K-flex 3 or 4 times for 10-14 days though only, (500mg 4x's a day) for infection at incision site,) after 2 surgeries. and tons of natural treatments, My integrative medicine doctor still treats me for Lyme disease, despite* what the tests & other doctors have said, so I'm on a natural tx protocol for it, (Samento extract, etc..)

    Sorry, just a little aside there, mags! ^^^ (((Hug))) for you, you seem nervous, please don't be, we'll all be here for you, & I'd be glad to help you in any way that I can if you have any questions, just person to person, patient to patient. I'm a pro at the tests the run for MS so if that's the route they go, I'm around reading the boards lurking, :)
  8. jfrustrated

    jfrustrated New Member



    Dear magsfms

    Time will tell if you have MS or CFS. Sounds horrible, but it is, to a large extent, true.

    After I was diagnosed with CFS, my doc. sent me to a neurologist for various tests to ensure that I did not have MS. (She did not tell me that last bit, fortunately, I would have stressed terribly and been scared, as you are now.)

    The various tests I had indicated that there was some abnormality in the brain and so the neurologist ordered an MRI. It showed some leisons which could indicate MS. However, he also said that it could indicate CFS. The only way to tell the difference was to wait - watch symptoms - and have another test in 12 months time.

    My condition had not changed - and did not change for the next two years of tests: so the neurologist said that he did not think that I had MS because other things would have developed in that time.

    You may have MS, but don't be scared, because the odds are in your 'favour' that you fms. In addition, since this diagnosis is coming from an apparently inconsiderate, biased, unhelpful, negative, thoughtless family Dr., I would tend to wait and see. ( You may detect a slight anger in me re. the way your doctor has treated you.)

    Perhaps you could try another doctor and start afresh????
  9. tansy

    tansy New Member

    in my case. Since then spinal problems and borreliosis/lyme have explained some of my neurological symptoms/deficits; I am awaiting the results of a blood test for CPn.

    I am part way through my non ABx Tx and am less physically disabled now than I was.

    Tansy
  10. DanaC65

    DanaC65 New Member

    MRI showed a few small white lesions on my brain and my Neruo Doc (I should say X Doc) said it was nothing and all was normal. I see my Primary care Doc next week and I'll ask her what she thinks.