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    New and Confused

    I was diagnosed with MS in December, after having a severe and acute attack of numbness, tingling, and weakness in my legs. It felt like my legs just forgot how to work. No pain was involved, just awkwardness and feeling like one leg was sort of dragging. I saw a neurologist who had me do 4 MRIs (including the brain) and a spinal tap. I went through a heavy dosage steroid tx for three days, followed by another ten of tapering off oral prednisone.

    Consequently, I got fired from a job right around the same time, then got on my partner's plan, so had to switch insurance, and, therefore, doctors. I was referred to a new neurologist under my new health care by my original neurologist.

    But, guess what? After waiting a month to see the new neurologist, she concluded (after flipping through the test results that I brought along, because they had apparently not been uploaded to their system yet) that my previous neurologist was wrong. She thinks that I had a severe and acute attack of transverse myelitis. And that any symptomology I may have now is a cause of my age, my weight, and "general wear and tear" on my spinal column.

    I am experiencing the exact same symptomology I had originally, and now have a doctor that won't listen. Has anyone else had a conflicting diagnosis, and how did you get it resolved?

    ** 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
    Hi Kel AppNic and welcome to MS World! I am sorry you are feeling so bad.

    Transverse Myelitis can be a precursor to MS at some point, or it can just mean TM. If you are having the same symptoms as you were in the beginning, it is probably still TM. TM can leave behind symptoms just like MS does. Therefore you will have lingering symptoms from your TM. The fact that they come back from time to time is no big deal. Sometimes they may give you steroids, sometimes not. It depends on whether the lesion is lit up on MRI. MS patients often get 5 days of IVSM. The taper is up to the physician. Most do not give one.

    Hope you feel better soon.
    Take care
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #3
      It sounds like there are two different things going on. The first is the disagreement between your neurologists about your diagnosis and the second is the question about whether your current neurologist is responding appropriately to your symptoms based on her own diagnosis.

      It often takes another medical opinion as a tie-breaker to try to get to the bottom of what's going on. The easiest thing to do is to just change neurologists to another one nearby on your insurance plan's list of doctors. But that might not be enough.

      In the case of a disputed or uncertain diagnosis it's better to be seen by a doctor who regularly evaluates patients with disputed or uncertain diagnoses. That might mean seeing a neurologist farther away than you'd like. It might mean having to petition your insurance to approve an evaluation by an out-of-network specialist. The higher caliber specialists tend to be at higher caliber clinics such as university medical centers and specialty clinics. Once you have a more clearly defined diagnosis you'll know what treatment options are available.

      The other reason you might have to (and maybe should) change neurologists is your current neurologist's opinion that you can't have lingering symptoms or recurring symptoms after having had an episode of transverse myelitis (or in your case, partial transverse myelitis). I have lingering symptoms from a large spinal cord lesion that healed long ago and isn't visible on my MRI anymore.

      And it might also mean that she might not recognize that sometimes transverse myelitis occurs more than once in the same person. It might not be realistic to blame residual or recurrent symptoms on age, weight, and "general wear and tear" when a person has already had a spinal cord episode. That doesn't sound good to me. It means that you might not be getting the best symptom treatments. It might mean that she might not be prepared if something with your case changes. And it means that she might not be willing to change her opinion and treatment if new circumstances show that her diagnosis wasn't correct.

      So first thing, it could be a good idea to get started on getting another opinion from a different neurologist to try to clalrify what's actually going on with you. I wish you all the best on your journey!

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