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Thread: I have Multiple Sclerosis

  1. #101
    Senior Member Gixxer's Avatar
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    Quote Originally Posted by RoundEye View Post
    I donít know what to do at this point either, my compass is still spinning in circles about this. As far as what to say, ďdude, you are so f**kedĒ works.
    i know what you do. whatever it takes one day at a time. some days it will be from minute to minute. you need to watch this:

    http://forums.speedguide.net/showthread.php?t=254142


    edit: what i have read from previous posts, you are a fighter. why would that change because of this? i think the difference now is, that you have to fight harder and be stronger.
    a.k.a. GSXR 750

  2. #102
    a0c2e4

    Is that ace???

  3. #103
    Senior Member Gixxer's Avatar
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    Quote Originally Posted by Mad_Haggis View Post
    a0c2e4

    Is that ace???
    ??? who, huh, how?
    a.k.a. GSXR 750

  4. #104
    R.I.P. 2018-07-16 RoundEye's Avatar
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    UPDATE:

    I just received my first shots of meds, due to cost no pharmacy around here carries it. It was $2751.00 for 12 self-contained needles of the meds.

    Is that crazy or what?

    I could afford all my other meds but this is forcing my family and I on public assistance.
    Sliding down the banister of life ..........................

  5. #105
    Senior Member Gixxer's Avatar
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    Quote Originally Posted by RoundEye View Post
    UPDATE:

    I just received my first shots of meds, due to cost no pharmacy around here carries it. It was $2751.00 for 12 self-contained needles of the meds.

    Is that crazy or what?

    I could afford all my other meds but this is forcing my family and I on public assistance.
    no shame there.
    a.k.a. GSXR 750

  6. #106
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by Gixxer View Post
    no shame there.
    I guess not. I have to learn to ask others for help when Iím in dire straights. After hurricane Katrina I got some food from Red Cross and temporary food stamps from the state but I got more help from the people here at SpeedGuide then I did from any other agency. Iím telling you, the people here have saved my ass.

    Do you realize that I have to give myself that shot everyday? Then after awhile I think it moves down to three times a week for the rest of my life.

    Thatís almost $6800 a month in meds. Come on man, who can really afford that?
    Sliding down the banister of life ..........................

  7. #107
    Moderator Roody's Avatar
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    Quote Originally Posted by RoundEye View Post

    Thatís almost $6800 a month in meds. Come on man, who can really afford that?
    As I mentioned previously that price is offensive. It's despicable that in a country like this one that people like yourself run into problems like this. Drastic and quick steps need to be taken to reduce those costs. We aren't talking about a new disease here. I'm sorry you have to go through this man.

  8. #108
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Doing quick research into it I think its synthesized from the ovaries of a Chinese hamster. Stay tuned for my sweet and sour hamster recipe.
    Sliding down the banister of life ..........................

  9. #109
    R.I.P. 2018-07-16 RoundEye's Avatar
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    The doctor refused to sign off on my DMV form.

    Iím really trying to keep my personal problems off the board and contained to this thread but I am pissed.

    I have to renew my driverís license and the DMV wanted a signed form for my medical condition. The doctor refused to sign it because my equilibrium is shot. Not being able to drive again isnít too bad, I havenít driven for months anyway. Itís losing the giant ďMĒ for my motorcycle endorsement that hurts so much. I guess the fact that Iíll never be able to ride a bike again is hitting home now. There was a time when you would have had to pry my cold dead fingers from the bars in order to stop me from riding, now I feel like that time has come. Keep in mind that I used to wrench on bikes for a living, at one point bikes were my life.


    Sliding down the banister of life ..........................

  10. #110
    Moderator Roody's Avatar
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  11. #111
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Some of you affected by this disease may find this interesting

    Hereís a 16 page thread, written by some of the people going through it, about spinal injections derived from donated umbilical cords done in Costa Rica and Israel. Looks promising so far.

    Why is it not done here? Thatís another thing you can blame on former president Bush, he vetoed a bill to allow brain stem cell research.

    And you wouldnít be surprised by the amount of people complaining of the cost of meds either.
    Sliding down the banister of life ..........................

  12. #112
    R.I.P. 2018-07-16 RoundEye's Avatar
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    UPDATE:

    This probably includes any person or any person who knows someone involved with an autoimmune disease

    Iím not one for snake-oil treatments but LDN shows some promise. Itís the best option Iíve run across in my journeys across the net researching matters.

    If you think its BS please feel free to say so.

    http://www.lowdosenaltrexone.org/
    Sliding down the banister of life ..........................

  13. #113
    Freak Gandalf's Avatar
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    Sorry to here about this, you are in my prayers
    Give me a fish, and you feed me for a day, teach me to fish and I won't be so damn lazy.

  14. #114
    R.I.P. 2018-07-16 RoundEye's Avatar
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    I hate to bump this up but I have to rant,

    I’m having a very hard time with this MS thing.

    Since I can’t drive and I’m home damn near 24/7 I decided to take the opportunity to improve my writing skills. Well my cognitive skills have been impacted more then I initially though. As hard as I try my ability to write anything has turned to ****. I found this on Google when doing some research,

    Word recall is a problem that is often reported in MS. If you suffer from this, try not to get hung up about the exact word. People are often happy to chime in with the right word anyway - let them.
    From here

    I realize that finding the right word is a problem for most if not all writers, but I don’t need a disease hampering me even more. Sorry about the rant but every time I try something lately it seems I hit a brick wall.

    Do you want to improve the medical care in this country? Then require ALL doctors accept Medicare and Medicaid. The doctors I have found near me only take cash and insurance. Cash? Are they nuts? As y’all may remember my Rebif, the shots I have to give myself about every 48 hours, cost 2650 dollars a month. If it wasn’t for Medicaid I wouldn’t be able to afford my medication. I am beyond broke at this point and don’t know which way to turn next.

    Most doctors are scared sh**less of a patient with MS. There are only couples around here that will help and take Medicaid. They are over an hour away and I’m still trying to find a reliable ride. My wife can’t miss anymore work because we can’t afford it and my mom is already giving my son a ride back and forth to school. If she isn’t there at dismissal time it causes me and my family a world of grief. They probably won’t report me but they have been known to report it to child services in the past when a parent doesn’t show up (I can understand why in some situations)

    Sorry about the long ass rant but I can’t express in words how this has impacted every aspect of my life.
    Sliding down the banister of life ..........................

  15. #115
    SG Enthusiast OSULLY's Avatar
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    Rant away RoundEye. It's suppose to be good for you. I think we can handle it, I just wish I could help. I would drive you crazy since I have the same word problem. I always have to find other ways to say things because I can't remember one freakin word. My meds cause it though and thats nothing compared to what your dealing with.
    ___________________________________________

  16. #116
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by OSULLY View Post
    ...I can't remember one freakin word...
    We would sound like two blithering idiots if we sat down and talked to each other. To be honest Iím dealing with all this new stuff the best I can. I realize that no disease of any kind is fun to deal with but this one is nasty because the symptoms vary from person to person. Thatís what scares away doctors so much. There is no cut and dry or proven way to treat it. Sure there are some common symptoms but symptoms can vary so much because it is a nervous disorder. Lesions can form on the brain, brain stem or the spinal cord. Unfortunately on me all three areas have multiple (uncountable) lesions and have been impacted.

    It still is fairly new to me and as soon as I get an experienced doctor with MS maybe Iíll get some more answers to my questions. Online forums can only help so much. I need answers to my specific problems.

    So yeah, I go through the fear of ďwhatís next?Ē or being pissed off because I canít do what I used to do or even the solitude of sitting home by myself all day. I know the solitude should be enjoyed at times, but trust me it gets old after awhile.

    I know Iíll get somewhat use to it after awhile but for now itís still fairly new to me.
    Sliding down the banister of life ..........................

  17. #117
    404 Sanity Not Found PsykoPenguin's Avatar
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    "I'm like a lion on the prowl after prey"

  18. #118
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    .....
    Last edited by Russell; 03-14-10 at 10:31 PM.
    Looking for work............

  19. #119
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Russel, I feel for ya man, I really do.

    Hereís my latest struggle. I was given Social Security. I thought my problems would be over when I got SS but they have just begun.

    Medicare doesnít kick in for two years after you are granted SS. Medicaid (the state) was paying for my meds. Now that I have been granted SS, the state cut me off. They said I should be able to pay for my meds myself since I have an income now.

    My meds total about $4800.00 a month. Iím on about 14 different meds to try and get my multiple sclerosis under control. The worst of all is my Rebif Tritration, which is a shot I have to do three times a week, the cost is over $2800.00 a month.

    I get a whopping $1500.00 a month from SS. Now Iím expected to pay for my own meds, doctor visits and medical testing until my Medicare kicks in, in two years. This all went down last week do I donít know how Iím going to pay for it all.
    Sliding down the banister of life ..........................

  20. #120
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by UbahPenguin View Post
    Thank you. I really like that picture.

    Sliding down the banister of life ..........................

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