I Think I Need To Be Evaluated for MS..

Discussion in 'Fibromyalgia Main Forum' started by lgp, Nov 15, 2008.

  1. lgp

    lgp Well-Known Member

    and has anyone here been evaluated? Did you go to your rheumy or to a neurologist? Should I start with my internist first? This is all so confusing.

    I am starting to experience bladder problems and periodic numbness in my left thigh among other odd things that may point to MS. I am not even remotely nervous about the possibliity of it. It's the not knowing that's causing me anxiety.

    If any of you have any thoughts on this or experience with this or at one time received an MS diagnsosis, please post for me . The more of you I talk with, the more assured I will feel before I go. Thanks.

  2. daylight

    daylight New Member

    I just went through three years with a dx of probable MS to
    finally find out that they were wrong.MS mimic several different
    diseases. I first went to my GP with my symptoms -numbness in right side , rashing , blurred vision,chronic infections(respiratory),severe back/neck pain,discoloration in hands and feet,swallowing trouble ,head aches,bladder urgency ,bowel trouble,gait.
    He first ran an MRI w/ contrast of my brain. It was negative.
    Then he did pretty much nothing . I was dx. with FM and givin painkillers and anti anxiety meds for pain . which didn't help because i was allergic to them.
    After that I was sent to a neuro. rheumy and ophthalmologist.
    The Neurologist saw me for five minute. I walked for him,he looked at my eye,check my reflexes then told me that he couldn't find anything and said it was FM.
    The Rhuemy ran a dexa scan showing some bone deterioration,
    did x rays of my spine. showing,spurs in cervical and thoracic,some stenosis,arthritis, and previous inter verta bra fracture. He was the worst. He says FM and I said no it isn't just FM. He gets mad and yells at me and say If you can accept the FM dx then I can help you . I fired him.
    The ophthalmologist found severe vision lose but couldn't help much . Dx. me with tn.
    Three years later I get a Rhuemy that finally runs the right blood test and dx's me with RA and possible Lupus,among other things.
    He tills me that there has to be lesions showing on the brain MRI to be MS. I know that this isn't always true. They can also show up on the spine as well and be MS. But I haven't had anyone do a spinal MRI yet.My doctors won't do one.
    MS can take years to diagnose. (i know that this is hard to take) . The journey can be a long one. I had to tell my family that it doesn't matter want they (the dr's) say it my body and I could see that there was things going wrong.
    Oh I also in this proccess was forced to see two psychiatrist
    who gave me a clean bill of mental heath ,both agreed that I have a very visible physical illness.
    But even after all this time my doctors still ask ever time I see them if I'm depressed. lol
    Please get checked out . If it is MS or something else you need to be seen . And if the first doctor doesn't help ,don't wait see another.

    take care,

  3. jole

    jole Member

    Actually, I was evaluated for MS before my FM diagnosis was made. My neurologist did all kinds of testing...MRI of brain, CT upper and lower back, all the lab work, etc. The only way to diagnose anything we have is to rule out all other diseases.

    By the way, I have the bladder problems...from the FM, and also the numbness at times. I think you'll find many others that do also. BUT, yes, you should have MS and other things ruled out to be sure that what you have is truely CFS/FM.

    A neurologist is the place to go for this test. Best of luck to you***Jole***
  4. mom2many

    mom2many New Member

    For years I thought I had MS (I had almost ALL of the SX), I saw many different Dr.'s and spend thousands of dollars of testing.
    I found out I have MCS (multiple chemical sensitivity).
    I have LOTS of numbness issues.
  5. 3gs

    3gs New Member

    I went thru many mri's and spinal tap thinking it was MS.
    even tried all 3 drugs for it(nightmare)

    have lesions on brain all symptoms for MS. one doc says no one says yes one says...you get the picture.
    Its fibro cfs myfaiscal pain mcs post polio.

    I had hoped(almost for it to be MS)because their doing something about it. Oh also got told Parkinsons. symptoms are the same for fibro etc.

    go to nuero first. sorry very brainfogged today.

    good luck hope its not mS
  6. Chelz

    Chelz New Member

    Laura, I was evaluated for MS about 4 years ago because I had bladder problems as well, along with hand tremors, and I also lost vision in my right eye which was just temporary.

    I went to my then primary care doctor. He wasn't that concerned about the bladder problems or even the hand tremors, I believe he thought this could be due to the FM I have, but the vision loss had him concerned as well as I.

    I had to have a duplex scan on the arteries of my neck first, that would rule out any kind of stroke, ( I was only 38 at the time). This test came back negative. This test was performed because of the vision loss and sometimes people with MS will lose vision in one eye, and also to rule out stroke.

    Then I had to get an MRI of the spine and of the brain. Both had come back negative. The spine MRI showed a lot of bulging disks in my back, also spinal stenosis which I believe is common and also a central broad based disk bulge of the sacrum.

    I also had a nerve conduction test which was also negative. The baldder problmes and hand tremors have subsided, at least a little. No one had any other answers for me except that it was my FM doing weird things to me.

    The vision loss never happend again, so, my doctor didn't pursue anything else.

    If I were you, just start with your internist like I did, then I had to go to a neurologist.

    I understand the "not knowing" causing you anxiety, believe me, I went through the same thing and it is completely understandable. Just keep in mind, if you have FM like me, so many odd things go on within the body, but of course you have to keep your internist informed and let him make the decision where to go next. Peace and good luck to you Laura, I hope this has helped you. Hugs Chelz.
  7. ladybugmandy

    ladybugmandy Member

    i have read that sometimes people have MS but it never shows up on an MRI. they find out only on autopsy. you can have a very mild case of it and not know.

    best of luck
  8. Rafiki

    Rafiki New Member

    Have been diagnosed with the following, all highly suggestive of MS, over the course of illness: Neurogenic bladder, trigeminal neuralgia, foot drop, possible optic neuritis and many lesions in deep white matter (several in periventricular area) of brain on MRI.

    I had/have a host of other symptoms not necessarily specific for MS like extreme fatigue.

    My evoked potentials were normal. I declined an LP but would have consented to it had my EPs not been normal.

    I was diagnosed with MS by two doctors and, subsequently, undiagnosed by two doctors.

    My symptoms, onset and pattern of viral reactivation were always classic ME. (reactivation or active infection of HHV6 is seen in both MS and ME)

    Doctors who are friends of mine still believe I have a fairly benign RRMS. I believe I have ME.

    I think we may find their are many diaguessed with MS who actually have ME. Reliance on MRI for diagnosis has already led to many being misdiagnosed. It's equally likely that some with ME have MS. They are remarkably similar in so many ways.

    Good luck to you Laura; ruling in/out MS can be exhausting and frustrating.

    Peace out,