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    Been awhile since I posted here.

    Figured given its been quite a bit since I have posted on the forums, would say hello to everyone and let them know I'm doing well.

    Was first DX with RRMM back in 09 and still have RRMS now a-days, slow decline like all people but still get around using my walker, and can do stairs either the slow way or hard way.. Have gotten some vision problems in the last few years, but still doing good on Copoxone.

    Though am a little nervous and hope it really is written mistake, looks like my Doctor ended up overworked today and wrote down DX secondary progression in my medical notes. -_- so nervous about that to mo end given it has been working for so long and kept things slow, my first ms attack made have to use a walker and effected my balance a lot, but apart from some minor vision stuff have been stable now really nervous that my doctor is moving me to secondary without telling me and there really is nothing out there I can' afford for treatments to that. But am hoping it really was a mistake cause he did seem very tired, and will be trying to get cleared up over the phone. But next time his nurses call and say he has a meeting may just redo it for another day, cause looks like he really was over worked that day and seemed to be more the one MS person waiting for him. Think they booked every back to back and most likely doubled booked cause that was the quickest visit I had with him, so hopefully I am over worrying.

    But that is about all that is new with me, and oh hate summer and looking forward to fall, got a pack of pendisone from my last visit to help me get through it a little better thankfully,

    Sorry for typos and errors and hope everyone is handing the heat well.

    #2
    Hi RedTalon - good to hear from you!

    So glad to know that you are doing pretty well (all things considered, with MS).

    Originally posted by RedTalon View Post
    Though am a little nervous and hope it really is written mistake, looks like my Doctor ended up overworked today and wrote down DX secondary progression in my medical notes. -_- so nervous about that to mo end given it has been working for so long and kept things slow, my first ms attack made have to use a walker and effected my balance a lot, but apart from some minor vision stuff have been stable now really nervous that my doctor is moving me to secondary without telling me and there really is nothing out there I can' afford for treatments to that. But am hoping it really was a mistake cause he did seem very tired, and will be trying to get cleared up over the phone.
    Hopefully you will get that cleared up, since you have basically been stable with the Copaxone. I guess Doctors are human too.

    Originally posted by RedTalon View Post
    But that is about all that is new with me, and oh hate summer and looking forward to fall, got a pack of pendisone from my last visit to help me get through it a little better thankfully,

    Sorry for typos and errors and hope everyone is handing the heat well.
    Looking forward to cooler weather here too, in Northwestern Ohio. I don't tolerate the heat well either!

    Nice to hear from you, RedTalon.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Welcome back. You definitely want to get that cleared up quickly. Since insurance companies seem to rule our healthcare in the US, I would hate for you to have an interuption in your Copaxone schedule due to an error. There is a possibility your insurer could deny Copaxone since I believe only FDA approved for RRMS, not SPMS.

      If your neuro feels SPMS, I would definitely have a discussion as to why he feels that way. If it's the absence of relapses, then how does he know it's not due to Copaxone doing its job?

      Good luck.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Originally posted by pennstater View Post
        Welcome back. You definitely want to get that cleared up quickly. Since insurance companies seem to rule our healthcare in the US, I would hate for you to have an interuption in your Copaxone schedule due to an error. There is a possibility your insurer could deny Copaxone since I believe only FDA approved for RRMS, not SPMS.

        If your neuro feels SPMS, I would definitely have a discussion as to why he feels that way. If it's the absence of relapses, then how does he know it's not due to Copaxone doing its job?

        Good luck.
        Yeah he knows what is up with me, see him once every 6-8 months and he has me stable on the disability score of 6. Also talked with the nurse on call today who can see all my files and she says she sees it has RRMS vs SPMS which is how doctors label you before you go into secondary progression with and without relapses and such, so still label RRMS on her side of the files it seems. Doctors and there fancy systems and words, and how they follow things for MS causes no end of confusing and such.

        Seems the notes I'm seeing are not what is on files, like i said have a feeling its an error and yeah, so may be a filing and system error, but the nurse directly sent a note to my doctor explaining things so hopefully will hear things back, given one thing is saying one thing and I'm seeing something else, but seems the main file has everything correct but time will tell.

        But got the question and info I'm seeing out to my doctor, so with any luck will be fix right quick now that we hopefully found where the problem is and it doesn't seem to be my doctor which is good, just system issues and staff being tired Friday and what not I hope.

        But I assume he knows its working well cause also in the same note he says stay with current plan and treatment and copoxone is the current plan and treatment, so yeah error like I am thinking thankfully.

        Also my insurance seems more corner if its treating any any ms with any type of relapeasing has part of MS more then rrms(Had to do a big of digging through pdf files and still could be wrong), but rather not take the chance of having conflicting stuff out there has oppose to what should be on all files and risking losing a treatment that has kept me stable for years, well has stable has any with ms can be after a major flare.

        Thanks for the replies you two and glad to see another person from Ohio, sorry for typos and errors.

        With any luck my little problem will be solved soon and may just be my end I'm seeing things on.

        Comment

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