another opinion

well, it was interesting, meeting with another neurologist. she practices at st. elizabeth’s medical center, at a real ms center. having to relate my whole history again was a good exercise, and i was glad my wife alison was there to fill in the blanks (i was glad she was there for other reasons as well). she (dr. ellen lathi) kept stopping me, not really caring what this doctor or that doctor had said about this or that symptom over the years, which was refreshing. she just wanted to hear my story, my interpretation and my experience. we talked about what meds i’ve taken and now take, symptoms i now have and have had, going back 20 years. she looked quickly at the mri images i brought with me (show and tell!) and leafed thru the pile of notes that my maine neuro had sent. she had me walk up and down the hall, timing me with a stopwatch, she did all the strength tests and reflex tests.

she said that one of the only reasons a person goes to see another doctor was that the person has a question. the issue i brought was a disagreement i had with my neuro – he believes that i am on the cusp between rrms and spms, while i am convinced that i am all the way into spms. which, i believe, means that medications like tysabri, which i’ve been on for about a year, don’t offer any benefit. i had stopped the tysabri – i hate the i.v. part, and it’s very expensive (someone is paying a lot of money for it, not me) and my portland neuro said he wanted me on SOMETHING, so i went back to tysabri, tho i disagreed with him.

dr. lathi, admittedly after only an hour, said she had no doubt that i had been spms since before i first saw the neuro, before my dx, back in 2003. she said that if i were her patient, i would not be on tysabri, that the risk, as slight as it is, far outweighs any possible benefit. she did, tho, offer several positive suggestions. very large vit. d (she said everyone should be taking vit. d, ms or not), far more exercise/yoga than i’m doing now (which, since i don’t really do anything along those lines, it’s not hard to do more) with a personal trainer. she also talked about some new meds coming along that will probably be of benefit to spms. there’s 4-AP, (interestingly enough it is now used as a bird poison)which when it gets approved will be called fampridine, and,so dr. lathi said, will help with gait issues (drop foot).  there’s rituximaub, cellcept, and chemo with cyclophosphumide.

it was a very well spent day (the 2 1/2 hours to boston, the 2 1/2 hours back). this was the first ms second opinon i have gotten, and to hear fresh perspective was great. i had gone in thinking there was not much that could be done to improve my condition, and left very hopeful.

well, there’s more but i think i’ve said enough, and it’s time for NCIS.

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4 thoughts on “another opinion

  1. Hi Stephen: I am so glad you had a positive experience and got your second opinion. It puts alot of questions to rest for you and I know you are more content since this trip. It comes through in your writing.

    While I am not a fan of Tysabri, I do support the thinking about Vitamin D and D3.

    Please keep us updated as you make changes in your regimen. Anne

  2. Sounds like it was well worth the trip.tell me what you think about the 4-AP. I was given a script for it (I’ve been off all other shots/Iv’s for a year) and have been reluctant to fill it. I was told to bring it to a compounding pharmacy.
    I was on cellcept a few years back. I did not tolerate it well.I don’t know about the other suggestions.

  3. wow…i am thinking about seeing a new doc myself. sounds like you got a lot of good information and you seem pleased. wanted to apologize for not being around so much. just trying to catch up now.

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