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.

6

The only thing that ever reduced the pain from MS hug for me was medical cannabis. It’s only available privately. Which is incredibly annoying.

7

How severe is your MS hug? and what area is the hug predominantly? Sad that cannabis could be the only potential treatment… that doesn’t lend well with me.
Thanks Tom.

8

Hi tomyelverton1, So firstly sorry to all you issues, it sounds awful. So the only thing I could suggest is Sativex, it’s aimed at spasms and stiffness, I have terrible stiffness in my legs and take Baclofen, which does help up to a point, I was referred for a review to see about Sativex, but was told if |I took it and lost all the stiffness I’d be in a wheelchair. Anyway I just thought maybe it would help your situation, why not ask your MS nurse, good luck.
Jean

9

Basically… it’s shocking, but more so disappointing that with the money thats pouring into research and the current medical expertise (or lack their of), can come up with NOTHING that will have ANY meaningful affects on helping us with this situation… Crazy!..