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  • plaquemom
    hello!
    i have been symptomatic for four years now.
    after seeing rheumatologist, infectious disease, cardiologist, endocrinologist, naturopath, reiki master, chiropractor, and more....including going to three major teaching hospitals and the Mayo Clinic....
    my local neurologist says, "you have MS- but, I can't prove it yet"
    I have had spinal tap, evoked potentials, extensive eye tests by specialist, emg and ncs, maybe 5-6 MRIs of brain and cervical spine, MRAs, lumbar puncture....everything is nevative
     BUT on exam my reflexes are off, I can't feel pinpricks or even needles deep in my arms, I can't walk on my heels, etc
    fatigue had destroyed my life.  Even with medication I'm falling asleep against my will at 2 pm
    numbness is intense and daily
    weakness is so profound I can't pour a glass of milk and handwriting is sloppy and sometimes impossible
    the list goes on
    ----I'm watching my ability to complete acts of daily living go away pretty quickly.
    ive seen maybe 20 doctors in four years....
    what do I do now??
    has anyone been diagnosed with NO lesions and basically only on exam?!  Help!
  • kleighallen
    My situation is slightly different, but I was diagnosed in 2007 without lesions. My lumbar puncture showed elevated levels, but not crazy high, just definitely not normal. For almost 10 years I had only mild symptoms, usually stuff I could work through, occasionally more serious but always went away after steroids. I will say that I never read the usual symptoms of MS because I don't want that laundry list of negative stuff in my head, I thought it might make me think that everything was the MS. Eventually I started to doubt my diagnosis or thought maybe I just wasn't going to get as sick as other people. Until May of this year when I had a much more serious flare up. Took me a while to figure out it was MS, since I'm so paranoid about assuming things are- I go the other way and assume nothing is. Turns out I have lesions now. So apparently I actually have it. I had stopped taking my medicine because I felt good and wasn't convinced about my diagnosis. What I learned is that it is ultimately a clinical diagnosis and no one smoking gun can definitively say "this is it". It's a series of results and symptoms over time. If you have a good neurologist that you like and trust and he is treating you for MS, he could be right. I would say maybe you should get a second opinion, but it sounds like you've been through some doctors.  I will say that your symptoms sound a bit extreme for having no other evidence of the disease.  But I wouldn't discount it.  It may be worth trying another medication if you're not being helped by your current routine. I have insisted upon staying on Copaxone because it is so mild, but I know that I have to be ready to change when the time comes.  I hope the best for you. 
  • plaquemom
    Thank you for your reply.  Due to having no lesions or abnormal tests, I have been unable to get any treatment whatsoever.
    finally I got the diagnosis and am going to start on either an interferon or copaxone but I am scared.....
    i was diagnosed without lesions because basically nothing else makes sense
  • plaquemom
    Thank you for your reply.  Due to having no lesions or abnormal tests, I have been unable to get any treatment whatsoever.
    finally I got the diagnosis and am going to start on either an interferon or copaxone but I am scared.....
    i was diagnosed without lesions because basically nothing else makes sense
  • kleighallen
    I'm sorry you're having troubles getting treated. Believe me, I feel that for you. I  am currently being hospitalized for another flare and new lesions already (since the last time in June). It is scary, there is no way around that. But also believe me when I say that THIS IS NOT IMPOSSIBLE.  If you trust your doctors advice, then proactive treatment is probably the best idea.  As I mentioned, I chose Copaxone because of the really mild side effects. Some mild injection site reactions (sore lumps under the skin) but no real other interference in my life. You'll have to decide what is best for you with your doctor of course.

    Please don't let all of this discourage you. It is so frustrating when you have people making you feel like you're crazy, unfortunately that doesn't always go away. But you know your body. When things are bad like this for me, I give myself a few days to "feel the suck"  and then I have to pull myself back to being proactive about it. And sometimes you just have to shut some negativity out, whether it's coming from outside or inside. This isn't the end of anything. I always look for some humor. Like the other day I had to try to explain to a woman at work that I am perfectly aware that scoliosis doesn't usually cause this much trouble with walking...and that MS and scoliosis are very different ;-)
  • anywhereoutofthisworld
    See the following link: See link this link concludes lesions on the brain needn't be present necessarily for MS diagnosis. In my own case many brain lesions were found on my brain MRI as well as "o" bands in my spinal fluid but there are exceptions where someone can be diagnosed with no lesions so it's possible I have heard.
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