MS HUG - CONSTANT!!!! Need Help!

Symptoms and treatments
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1

I’m Tom, 63 and a retired PE Teacher. Back in April I was rushed to the ER with cardiac symptoms… to make a long story short and several MRI’s, and a multitude of doctors of all kinds from University of Rochester Stroke Team to Johns Hopkins Transverse Myelitis Center. I have ‘conflicting’ diagnosis’s: The bottom line is that a transverse myelitis Doctor expert at Johns Hopkins said I have had a rare Spinal Stroke at the c6 area in my spinal cord. The entire Stroke Team including their leading Vascular Stroke Specialist states that it was Transverse Myelitis. I am left with this:

  1. A constant MS HUG wrapped around my waist which NEVER goes away!!!
  2. No one to really talk to about my issues ‘cause they are just o weird’ and nobody understands.
  3. All medications; gabapentin, Baclofen, and other don’t seem to help!
  4. From the moments I wake up they begin, and don’t stop till I lay back down at night… even afternoon naps don’t help
    …Does anyone have ANY IDEAS AT ALL???
2

Sorry, no but then I’m not a medic

3

then making a thoughtless comment was unproductive to this forum…

4

Just acknowledging your question and saying sorry ‘no’ while also hinting that as MS patients I doubt any on this forum can offer any insights .

I hope your problems resolve or someone in the US health system can come up with a treatment for your symptoms

5

What I was looking for is the popular consensus as to what medication seems to work the best. CLEARLY gabapentin, baclofen are not working… WHat else have other’s tried that maybe would help… That’s what I was looking for, not compasion, not sympathy… actually some sensible discussion about WHAT WORKS BEST! It’s funny that I can remember over the years people discussing why they would consider ‘wanting everything to just be over’ (I guess that’s a nice way of putting it) mainly because of a bad illness etc… I would always think that was ridiculous… now I get why!.. and it’s no joke.