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    What's Next?

    Hi! Glad I finally found a group that will most likely understand what I'm going through. I haven't been officially diagnosed yet, but have gone through the wringer for the last three months. Test after test after test! Medication for pain management (haha) only. Started out with burning sensation all over, which led to a massive migraine, which led to an MRI of my brain. There, they found lesions. Not one or two or even eight.. I have sixteen! After a negative MRI of my spine, it was on to an LP that showed protein in the CSF.

    My original neurologist didn't think it was MS, though he's not a specialist, so I have a second opinion scheduled in a couple of weeks. But every day it seems there is something new. If it's not a headache/migraine, it's jaw pain, double vision, parathesis, EXTREME FATIGUE, vision problems, dizziness, heat sensitivity, or all of the above. But now I have constant cramping in my legs, feet, and toes.. whether I'm still or not. It hurts, I'm tired, I haven't worked for 12 weeks (so far), and my mood keeps fading. By the way, I'm "only" 40 and feel like 80. Any hopeful hints?



    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Zilyma,

    Sorry to hear you've had to join our group, but you're definitely at the right place. I was diagnosed very late in life, (58.5).

    Best piece of advice: learn as much as you can by reading and watching Youtube videos. The Rocky Mountain MS Center (MS Center on Youtube) has a wealth of information available.

    Start looking for a drug since you'll want to get on one ASAP after diagnosis. The Future of MS Treatment by Dr. Vollmer (on the MS Center youtube channel) goes through all the meds currently available. It is excellent. You don't mention your age, but the younger you are, the better your chances are for remission and recovery.

    The two best books I've read (and still have) are:

    The Multiple Sclerosis Manifesto by Julie Stachowiak
    Overcoming Multiple Sclerosis by George Jelinek

    Both authors have MS, and the books provide a wealth of information.

    Second piece of advice: Quickly learn to become a self-advocate! You'll soon learn the only person who knows what is best for you is YOU! If you're not happy with any decision, move!

    Best of luck as you begin your journey to understanding this disease.

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      #3
      I am glad you are getting a second opinion with an MS specialist. RU4Cats gives sound advice. Also, look up the MS mimickers as you may have one of those. There are about 400 of them so I will not list them here.

      Good luck and let us know how your appointment goes.

      Take care,
      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

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