MS Research update

I got emails about two different MS events going on tonight.  My friends, D and A, were going to the MS Research update at Miracle Mile Deli, so I went there with my husband.  A doctor from Mayo, Dr. Dean Wingerchuk, had a presentation about MS therapies and research.  Here are my jumbled notes:

Finglolimod or Gilenya is an oral drug on the way

• Look for macular edema (blurred vision) or elevated liver function (an issue with all MS drugs)
• Immune suppressent--infections, possible increase in cancer
• More intensive monitoring
• Must first use interferon or copaxone

1. Escalation -- lines of therapy
2. Induction -- example, cancer -- hit it hard
3. Combo

Issues "caused" by MS:

• Thyroid issues - Graves
• ITP
• Goodpastures disease
• Alemtuzamab triggers autoimmune disease  [WTF!]

4 diseases, 2 are autoimmune, 2 have little or no inflammation, oligodenrarogolopy (support myelin), degenerative

New drugs have more power, more risk.

Research is looking at biomarkers, pathology, selective therapy.  29 genes identified so far--immune related.

The Consortium is international and has about 25,000 people registered with MS.

Virus as a cause of MS is still being considered, maybe Epstein Barr, which is common, but more common in MS.

Immunology research: repair, remyelination

Neuromyelitis optica: distinct from MS which doesn't have antibody, but N.O. does.

I asked about Vitamin D deficiency and why everyone with MS isn't tested.  He says there is not yet agreement on what amount of Vitamin D anyone should have so there is no standard to test for.

I also asked about why the drug trials don't do brain and spinal MRIs, only the spine and he gave some explanation that I didn't thoroughly get.

When I asked about CCSVI, he laughed and said he was surprised it took that long for someone to bring it up.  He went on to kind of discount it, in my opinion, but said that if it becomes a viable treatment, it would be used in combo with one of the MS drug therapies.

It was worth the time to go.  I was surprised at what a small group was there.  Of course, I couldn't eat the food provided by the MS Chapter.