Oct 202004
 

Overall the teleconference last night was a lot more fluff than I anticipated. On the other hand Dr. Coil (or however you spell her name) is obviously very bright and I certainly learned some things. Here are some of the items that interested me – in no particular order:

  • Multiple Sclerosis is on the rise world wide. She didn’t offer any theories as to why though I would assume she does have some.

  • The re-myelination efforts in animals are going very well with a number of techniques (of course I didn’t write down what the others were so adult stem cells is all I remember). She did mention it is a challenge moving those into human trials due to the complexity of how to administer it into the body.

  • The sex hormones (Testosterone, Estrogen, and Progesterone) are looking like they are a promising avenues of study but in themselves are not acceptable due to their nasty side effects. The hope is to find the property that makes them beneficial and make a custom “hormone” that just contains that attribute.

  • She said there seems to be a correlation with people getting Multiple Sclerosis and having a childhood disease later in life. She didn’t name any childhood diseases so this was of little value to me. I can’t think of any childhood diseases that I’ve had in my adult years (i.e. I’ve only had the flu or a cold nothing weird)

  • Her thought is that Plasmapheresis has only limited value and should probably only be used if steroids fail to help. She said this would only be helpful to Type 2 Multiple Sclerosis but later said she didn’t really buy into the 4 types yet and that there seems to be growing support for there being only two types of the disease. (The types being how the disease operates and how it damages not Primary Progressive vs. Relapsing Remitting vs. Secondary Progressive etc.)

  • There is current testing with Arisept and the other Alzheimer’s drugs (whatever those are) to assist with memory and cognition with MS. The results have been mixed but there has been some good.

  • She is still waiting on better studies about Statins and the disease modifying charastics to see if they will be of much value. She suspects that there best use would be in a combination therapy and not by themselves.

  • She talked about Bone Marrow transplant but I’m not sure she gave her opinion on this (regardless I can’t remember it if she did) but as I recall she said the studies have been too limited to derive anything conclusive.

  • She seems to be a big fan of Novatrone even if only used for 18-24 months to break the cycle. I didn’t get her “only” comment since used every 3 months for 24 months would use 8 of the lifetime maximum of 11 doses. She said – and I’ve heard from my neuro – that the side effects from this are very tolerable. She of course cautioned against the dangers but said they are very rare. I still stand by I’m not taking this. This did seem indicative that she takes a much more aggressive treatment approach with MS than I am comfortable with – fortunately my neuro is more conservative like me – but I guess this is no surprise since she is certainly a researcher. I think I recall her saying that one mild exacerbation per year is unacceptable and warrants investigating a treatment change – but it might have been more than one mild exacerbation.
 Posted by at 4:30 pm

  One Response to “Teleconference "Latest Research" Overview”

  1. The “having a childhood disease later in life” comment interests me…I think I’ve heard something about this before. I am curious, because I am assuming that chicken pox would be in this category, and I didn’t get the chicken pox until I was seventeen years old. I spent the entire summer between junior and senior year sick and in bed, missed my final exams, the whole shebang. Of course, I also grew up in Buffalo, NY, which is second only to Seattle in American cities with the highest rates of MS. Almost makes me wish I still lived at home, because they have kickass MS clinics there. The Jacobs Neurological Institute is named for the Buffalo neurologist who helped develop Avonex (my mother actually knew him casually before he passed away).

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