mayflowerms

Close Multiple Sclerosis (MS)
Type: Primary Progressive MS

I have had symptoms of MS since I was about 19. However when I tested positive for the gene HLA-B27, it was thought I had Ankylosing Spondylitis. But about ten years ago my Neurologist (super smart Harvard grad), decided his "best guess" was that I have Atypical Progressive MS. MRI's show white plagues and are positive for demyelination. No protein in "S/P". Only treatment for me is IV Prednisone, which I tried for 6 mos. and quit (s-effects). So I happily(but painfully) trip etc thru LIFE!

Treatments

Neurontin Not Working

Made me gain weight , which added to difficulties. Basically anti-seizure meds, make the neuropathy and paresthesia worse.

Physical Therapy Not Working

No one know my abilities but me and I was way to difficult to try to relate this to someone pushing trying to use the one size fits all attitude. I got to know them pretty well and perhaps they showed me some ways to deal with vertigo and balance ( weighted hat etc But the therapy itself was not really helpful.

Prednisone Working / Worked

not oral prednisone, but IV prednisone, which is called Solumedrol. IV form worked but dangerous.

Solumedrol Working / Worked

This IV treatment helped with the pain. Problem was each time they had to "up the dose", as the pain was coming back sooner after each treatment. But it was helpful while it lasted. The biggest problem was one of my Ds was adamant that I think about the long term effects which could show up later in life (liver, kidney, heart problems etc)

Oxycodone Working / Worked

I have terrible chronic lower back pain as well as the "Miserable" MS HUG!!! Also have neuropathies and paresthesia, eye pain, migraines & on & on....Pain med makes it more bearable most days. I often skip doses or an entire day of med, so that it will remain more effective. I have no side effects from this treatment.