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Thread: Taken off Ocrevus- now what?

  1. #21
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by cruiser View Post
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    Lazarus,
    I'm talking with my neuro on the 17th to go over recent MRI results and new treatment options. Last time we spoke he suggested that my low WBC protects me so I don't need one. It's been 8 months since my last Ocrevus infusion. I'm trying to relax about not being on any DMD but I'm having a hard time. Every time I have switched from one DMD to another I have had a big attack. Last one gave me my limp- not looking for another loss. I've been on A, B, C, Tecfidera and Ocrevus now. Yeesh. 20 years feels like a long time now. I appreciate this forum listening. :)
    That’s why I mentioned IVIg. It is not chemo. Not a drug. It is a blood product..not created but, in a sense harvested!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  3. #22
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by cruiser View Post
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    Sunshine2,
    I go to an MS Center here in Hartford. My neuro has MS himself which I've never experienced and has it's positives and negatives. :) I have had many neuros due to moving frequently as a military spouse. I will definitely look into IVIG. I"m feeling a little panicky right now as my legs are giving me trouble. I want to keep the abilities I have, you know?
    Hi..just noted that you live right next door to me..so to speak. I used the MS clinic at Yale New Haven to direct my plan for a difficult time of cancer effecting my MS choices. I like using the researchers when there are big decisions to make.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  5. #23
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Ikoiko View Post
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    Linda, I plan to email my neurologist this weekend. I really lack executive function as part of MS. It is hard to get anything done.
    Yes!!!.........
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  7. #24
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    Lazarus,
    We can complain about the weather together this winter! 2 years new to the area as we are a former military family and have lived all over the US. It's been hard changing neuros every 2-3 years. Settled now until the kids are out of school/college. :)

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  9. #25
    Distinguished Community Member agate's Avatar
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    Having to change neuros is difficult. I had some luck getting a list of neuros from the local chapter of the MS Society. At least it was a start though there was no descriptive information about any of them.

    I was able to find more information by looking them up online.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  11. #26
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    Quote Originally Posted by cruiser View Post
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    Lazarus,
    We can complain about the weather together this winter! 2 years new to the area as we are a former military family and have lived all over the US. It's been hard changing neuros every 2-3 years. Settled now until the kids are out of school/college. :)
    Are you able to use the Yale nuero’s. Years ago Timothy Vollmer MD was there and I went to him for another opinion. I was very impressed with his clinical skills, ... he was the best of the best. Maybe other good ones are there now too?

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  13. #27
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine 2 View Post
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    Are you able to use the Yale nuero’s. Years ago Timothy Vollmer MD was there and I went to him for another opinion. I was very impressed with his clinical skills, ... he was the best of the best. Maybe other good ones are there now too?
    I saw Vollmer too..for a second opinion. He was great. One of the top MS researchers in the country. My great neuro collaborated with him about what to do about MS drugs right after I had a malignant melanoma removed. So the two looked at my options although Vollmer gave advice quickly and with surety.

    Anyway, I am seeing Meghan Hickey in Springfield, MA. She is at Baystate, Cruiser. I like her a lot but miss my neuro of 25 years who retired.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  15. #28
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    I thought I already posted this, but now I don't see it. I was diagnosed at Yale-New Haven when I was in grad school.

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  17. #29
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Ikoiko View Post
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    I thought I already posted this, but now I don't see it. I was diagnosed at Yale-New Haven when I was in grad school.
    I was diagnosed very quickly once the first attack began. I was using UMass medical in Worcester MA. Then I was lucky to switch after a few months to a research neuro who was at Baystate and on faculty at Tufts.i have always liked my doctors and feel very fortunate to have had people who worked with me to maintain as much as I have!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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