How do I know this isn't MS?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by MoosesMom, Jan 16, 2006.

  1. MoosesMom

    MoosesMom New Member

    I have been having some symptoms lately that make me wonder if I perchance have MS. The biggest thing lately is I have almost begun stuttering, I just can't get the words out of my mouth and I have been having rather bad bouts of dizziness. The symptoms of Fibro and MS seem close so I don't know how they determine which is which.

    Any help?
  2. TXFMmom

    TXFMmom New Member

    Dear, I had MRI's and Scans which pretty much ruled out MS.

    I had the same symptoms and still have them.

    FM can do this.

    An MRI could pinpoint whether you have any of the demilenation, I am not sure I am spelling that right, which accompanies MS.
  3. Angel6801

    Angel6801 New Member

    I wish I could help you... But, I couldn't. I don't have enough informatin about it. Even though I did research a lot about MS. I still unsure what I am having (MS or FM). I already had two small lesions in white matter which point at MS. However, my four other doctors doesn't think I have it while my other three doctors think I might have it. I am still waiting to hear what my dx was... Even though most of my symptoms do sound like FM but some of them do sound like MS. They are very hard to dx with. I am too get confuse with MS and FM. I already had MS specilist to rule it out complete cuz I didn't want to take chance of having MS untreat.. But, Right now I do have some doubts due to my last eposide. I guess we will have to keep searching. :)

    Good luck, and keep update :)
  4. CooBax

    CooBax New Member

    Hi Moosemom,

    I was in the exact situations you are in. Last Dec I had some sort of episode...long story short...it was my third episode....i ended up going to Boston to the Leahy clinic and had a ton of tests for MS....i had a lumbar puncture to test the proteins in my spinal fluid...it was negativr...i had four MRI'S all negative and crystal clear...i had EMG'S and eveocked response tests all of which are totally clear...My neuroligists says it would be close to impossible that I have MS. Yet all my symptoms seem to point to MS. It has taken me a long time to realize I do not have MS and it could actually be CFS. I am also looking into Lyme disease more extensively.

    I found I was able to find lots of helpful people on this message board and lots of people with the same symptoms. What r your symptoms? Hope you find some answers.

    Lesley
  5. CooBax

    CooBax New Member

  6. sofy

    sofy New Member

    because MOST of the docs dont know. They just follow whatever path they can back up with paperwork. I agree with MCD56

    Its not uncommon for people to have several different diagnoses including ALS and then to find out its something else. In my case it finally ended with Chronic Autoimmune Lyme brought on by having had the vaccine. Too long of a story to tell.

    A lyme doc told me he believes most of those syndrome diagnoses are junk that allows the doc to quit looking for the cause and to just treat symptoms.

    Its not that the docs are trying to mistreat just that they dont know the answer and are so glad to have something they can back up with a lab sheet, mri, etc and then treat without any worry for themself or the patient.

    The fear of liability and the heavy shadow of insurance companies really alter any objective thoughts of so many docs.
  7. sapphire

    sapphire New Member

    To those of you that have the MS symptoms you need to look really close at lyme. I have those episodes where I have trouble walking, dizziness, ect. I was misdiagnosed for 15 years with FM/CFS and possible MS. I have lyme disease and nothing else. I've been in treatment and seen some improvement. The first improvement since getting sick.

    I'm so thankful to have something that can be treated. I urge you all to get tested for lyme through Igenex or Bowen lab. My whole family has it unfortunately. So you can give it to your kids during pregnancy. Especially to those that have more than one family member sick please consider lyme. It can be treated with success. My lyme dr says all FM he has seen has been lyme instead. He's seen lots of patients.

    Sapphire101
  8. lenasvn

    lenasvn New Member

    I have Lhermitte’s sign,those come about sometimes constantly all day, sometimes just once or twice a day.
    I once had a bad experience of Uhthoff’s phenomenon
    where I ended up feeling paralyzed, I crawled on my four, just before that happend I felt an electric shock like feeling from my neck. I hold a popcicle and it falls out of my grip, hand goes numb/ tingly. I have severe eye pain that last for about a few weeks at the time. Suddenly one day driving, my bladder let go and there was nothing I could do. there was NO control. I just read up on this myself last night as being signs of MS or other neurological disorders. Have you had those symptoms too?
  9. DFWGirl

    DFWGirl New Member

    Hi!!
    Go to your doctor, and get an appointment for a spinal tap.
    Had 5..they hurt.
    If you have MS their are bands that should.. show up in your spinal fluid.Also, a good neurologist can usually tell..Their are also other test..find a good Neurologist!

    Hopefully that is not what it is..my brother and neice have MS.so I was tested several years ago. Good Luck!

    dfwgirl
  10. darude

    darude New Member

    Check the brain lesion post on here
  11. minimonkey

    minimonkey New Member

    This is my most recent symptom! I developed it about 4 or 5 months ago -- cervical MRI ruled out bulging discs, etc.

    Guess the brain MRI is next -- By G-d, I hope I don't have to have a lumbar puncture! And I hope I don't have MS... though it is certainly possible (as is Lyme -- I lived in Humboldt County, which is a lyme infested area -- and had tick bites at that time!)
  12. cindy41

    cindy41 New Member

    Hi MoosesMom
    I too have been ill for a long time. I first got sick in 1993 after developing what the docs called walking pneumonia and just never got my energy or strenght back. I have been to numerous doc and have had many test. Yet all these years later I am still sick. One doc said MS others said no, some said CFS, others say depression. My MRIs are all clear, but I did have an abnormal spinal tap ( don't let what you hear scare you, mine was not painful and I had no problems. Just make sure if you have one its with a good neuro who does many of them) I have a lot of MS symtoms, buzzing and tingling in my limbs, trouble swallowing that comes and goes. Trigeminal neuralgia, which is pain along the facial nerve. Numbness along my left side, and tremors. All of these things come and go.
    Anyway I am still in limbo and still looking for answers.
    Take care
    Cindy
  13. darude

    darude New Member

    I had an MRI and they found 40 lesions but Neuro said NOT MS and NOT neurological. They also found pituitary tumor. Going for third MRI shortly and will let you know what happens.
  14. lartistatigre

    lartistatigre New Member

    Dear Lesley,<BR>
    I would like to follow your journey... I believe we will only get this figured out if we share with others... I have ME/CFS, MYOFACIAL PAIN SYNDROME & much more.<BR>
    <BR>
    In 2012 I suffered a RETROBULAR OCTIC NEURITIS (RON) episode, I was hospitalized 6 night and they found about nothing, 2 month later in Rome within 4 four hours they found the above diagnosis plus a Central Scotoma and Herpes Keratitis (viral infection in the cornea) & Uhthoff Phenomena. My 2012 brain & spine MRI were clean. My 2012 spinal tap was clean. I will have another MRI in a few months. My PEV tests were good too.<BR>
    <BR>
    My lyme tests were negative but I do not believe they were high enough quality tests. I have active titers for HHV -3, -4, -6, Coxsackie Virus B1 & B2, Mycoplasma Pneumoniae igg positive.<BR>
    <BR>
    SUSPOSSEDLY... ME/CFS does not create Uhthoff's, or optic Neuritis, so with that said... there is something else and it is not MS.<BR>
    <BR>
    <BR>
  15. Nanie46

    Nanie46 Moderator

    I would encourage you to continue to explore the possibility of Lyme disease and related coinfections.<BR>
    <BR>
    Many people here with diagnoses of FM and/or ME/CFS have later found out they had Lyme disease.<BR>
    <BR>
    Lyme definitely can cause optic neuritis.<BR>
    <BR>
    Standard Lyme testing is very unreliable. Western blots by Igenex lab in CA are better.<BR>
    <BR>
    There is a new, more accurate culture test by Advanced Labs in PA. It actually looks for the bacteria, unlike antibody testing...see the following Prohealth article:<BR>
    <BR>
    <BR>
    http://www.prohealth.com/library/showArticle.cfm?libid=16624&site=articles<BR>
    <BR>
    <BR>
    Many people receive a clinical diagnosis based a thorough evaluation by a Lyme literate MD.<BR>
    <BR>
    Here is some great info about Lyme disease and coinfections:<BR>
    <BR>
    <BR>
    http://www.lymepa.org/Basics2007v1.2Rev.pdf<BR>
    <BR>
    <BR>
    http://www.ilads.org/lyme_disease/about_lyme.html<BR>
    <BR>
    <BR>
    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
  16. IanH

    IanH Active Member

    It depends on the Uhthoffs' and how it was diagnosed. Heat sensitivity is a definite symptom of ME/cfs, particularly those with FM. So much so that some people live in near freezing conditions to soothe the symptoms. (not a good thing).<BR>
    <BR>
    If FM is present with ME/CFS there can be any manner of neuropathy including optic neuritis which can affect vision. It can cause vertical diplopia, an unusual symptom where you see two of everything in the vertical dimension. Varying blurred vision can also be due to mild optic nerve problems. The infections, particular Herpes 1 (simplex) (which will be causing the keratitis) is also a common infection in CFS.<BR>
    <BR>
    However there are other things to condider:<BR>
    MS can easily be mis-diagnosed ME/CFS (The ME/CFS being what is left if something else is not confirmed) and studies have shown this. MS is sometimes hard to pick up in the early stages even with good MRI investigation. It can be three to five years before the MS is confirmed.<BR>
    I don't know anything about Lyme because we do not have it in NZ. so it is rarely a confounding factor in ME/CFS here.