MS Dinner and Panel Q & A

Tonight I went with my sister and two friends to an MS dinner, which featured an expert panel willing to answer questions. These were the notes I took:

Expert 1
-T-cell vaccine studies have not been positive so far.
-One question is why eye problems exist when the eye has no myelin.
-T-cells can react against myelin, but the question is whether it is myelin basic protein only or another myelin protein.
-So what causes the T-cells to damage the eyes? Are they targeting the nerve cells themselves?
-Stem cells from bone marrow can help repair myelin in the brain.
-Treatment response (DMDs) depends on "what perfect storm created your MS."
-Autoimmune diseases are commonly triggered by antigens--proteins in blood.
-Few people have been able to replicate Zamboni's CCSVI work.
-Please do not have surgical procedures until we see data that the CCSVI theory is true. The risks are too great for these surgeries. A few people have died. [My rebuttal would be that people have died from the MS drugs as well.]
-Autoimmune thyroid disease is more common in people with MS.

Expert 2
-Relapsing-remitting MS is all about inflammation. Primary progressive MS obviously has no relapses, and inflammation is minimal--different than RRMS. PPMS usually starts with lower limb stiffness, difficulty walking. Gilenya is being tested for people with PPMS at Johns Hopkins. Tysabri is being trialed for people with SPMS at UMD.
-Zamboni's study found that 100% of people with MS had CCSVI. Really? Every single person?
-Encourage you not to pursue it--dangerous.

Expert 3
-Epstein-Barr virus increases the risk of having MS.
-The VA is looking at military personnel, especially those on ships, for the effects of lack of sunlight exposure.
-Nortriptyline is a medication that modulates pain the CNS. It changes the ability of the brain to receive pain.
-The National MS Society has funded CCSVI research. There is no standardized approach to the research, so it has been hard to replicate the CCSVI results.
-The Buffalo CCSVI study was done by a Zamboni trainee.
-The is not a single antigen responsible for MS. Need to see it as a global response (something about antigen spread) and modulate that.

And today's data....
Sensory:

-Pins and needles: 1

-Tingles: 1, left thumb

-Paresthesias (burning): 3, feet

-Paresthesias (other): 2, prickles in left sciatic nerve

-Numbness: 2, the usual

-Vision: 2, more floaters today I think

-Nerve pain: 2--but it always gets much worse in the evening when I'm going to bed

Motor:

-Gait: 4, it was not terrible in the morning but bad by the evening

-Sore muscles: 4, calves, quads

-Fine motor: 2

-Weak muscles: 4

-Spasticity: 3, both calves and quads

Cognitive:

-Language processing: 2, got annoyed with certain speakers

-Memory: 3

-Attention: 0

-Confusion: 3

General:

-Fatigue: 3 most of the day but 6 in evening

-Balance: 4

-Sleep: 6, I got six hours of sleep AGAIN. This time because back pain from my period woke me up. I hate when I starts in the middle of the night, because I can't get ahead of the pain with ibuprofen. Anyway, I ended up not being able to sleep from pain and then just not being able to sleep. Now I can't wait to go to bed!

-Bladder: 2