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Thread: I have Multiple Sclerosis

  1. #41
    SG MVP Lefty's Avatar
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    Oh **** Tobey. That sucks. I sorry to hear about your condition.

  2. #42
    Tortoises R0cks :D Rivas's Avatar
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    Sorry to hear that, stay strong RE
    To be human is to choose.


    It is better to die on your feet
    than to live on your knees.

    - Emiliano Zapata

  3. #43
    Moderator David's Avatar
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    Quote Originally Posted by JawZ View Post

    I would ask TonyT via PM if he has any info on the drugs used to treat MS.
    Like marijuana?

    Tobey,

    Any chance of visiting LSU?

    Hell_Yes

    Luck is where preparation meets opportunity - Seneca

    "Anti-intellectualism has been a constant thread winding its way through our political and cultural life, nurtured by the false notion that democracy means that 'my ignorance is just as good as your knowledge.'" - Isaac Asimov

    It is my ambition to say in ten sentences what others say in a whole book. - Friedrich Nietzsche

  4. #44
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by David View Post
    Tobey,

    Any chance of visiting LSU?
    That is where I'm going now.

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

  5. #45
    SG Enthusiast OSULLY's Avatar
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    Don't know what to say, one of my brothers has been told he has MS but in his case there are other complications leading to his MS. You have my prayers.

    Chris O'Sullivan
    ___________________________________________

  6. #46
    The Quiet One WhoNut's Avatar
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    Ahh man. No words, except to say I'm very sorry.

    Keep fighting it friend - I know you will.
    When they kick at your front door, how you gonna come? With your hands at your head, or the trigger of your gun?

  7. #47
    Moderator David's Avatar
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    Quote Originally Posted by RoundEye View Post
    That is where I'm going now.

    Link
    In Shreveport, perchance?

    Hell_Yes

    Luck is where preparation meets opportunity - Seneca

    "Anti-intellectualism has been a constant thread winding its way through our political and cultural life, nurtured by the false notion that democracy means that 'my ignorance is just as good as your knowledge.'" - Isaac Asimov

    It is my ambition to say in ten sentences what others say in a whole book. - Friedrich Nietzsche

  8. #48
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    My wife was diagnosed with MS in her late twenties, she's 41 now. It is a devastating disease. She did quite well for a long time but within the last year and a half has begun to get worse. I hate to see how it tears at her emotions. Depression is very common with this disease. She gets so frustrated when she can't do the little things, and I know it kills her that she can't keep up with our boys.
    Fortunately, she is still able to work and has pretty decent insurance, because I doubt she could get disability at this point. She is in charge of pricing in our local Kroger and stays on her feet quite a bit. Like Tobey said by the end of the day she looks like she is staggering drunk. She so hates to have people stare at her and feel sorry for her.
    Her diagnosis came as a complete shock. She woke up one day and realized she was having trouble seeing out of one of her eyes. We went to the ophthalmologist who diagnosed her with optic neuritis. He recommended that she immediately make an appointment with a neurologist. She had a CT scan and was officially diagnosed with relapsing/remitting multiple sclerosis. She was treated with steroids at first, to help clear up the optical problem, then we were introduced to the very expensive world of interferon based medications. She was on BETASERON for several years, but then her new doctor switched her to AVONEX. Both are very costly even with two insurance plans. Thankfully we finally looked into cost assistance and found out she qualified for free medication. She will get her meds free for two years and then they will look at our situation again. I don't see our income increasing greatly in the next two years, so hopefully she will continue to qualify. The cost of AVONEX, which is administered weekly in shot form, is about $1900 for a months supply.
    We certainly empathize with what you and your family are going through and we will be praying for you.
    Looking for work............

  9. #49
    resident Humboldt's Avatar
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    Quote Originally Posted by Russell View Post
    The cost of AVONEX, which is administered weekly in shot form, is about $1900 for a months supply.
    Even appreciating the need for drug development I'm appalled at the cost of a series of shots like this.

    My parents just shelled out $13,000 for 2 sets of rabies shots after seeing a bat flying around their living room and bedroom:

  10. #50
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by David View Post
    In Shreveport, perchance?

    No, Iím going to the New Orleans location. Shreveport is quite a ways from me. The NO hospital isnít too far from me except Iím on the Westbank of the Mississippi river and itís on the Eastbank. Not too bad other then rush hour and other high traffic times at those times itís a real bitch to get to.

    Iím trying my best not to become more of a burden on my family then what I already am. Iíll tell you this though, this explains A LOT of my problems. Iíve read quite a bit on it and it explains why Iím having trouble seeing out of one eye (like Russell mentioned), the extreme fatigue, Iím a complete loser at owning my own business (Iíll admit to that) but hurricane Katina helped push me over the edge, crawling through hot attics of a new house in the south ainít fun. Getting fired from Harley because I was too slow. I dropped a copís bike and they were not too happy about that at all, even though no damage was done. My foray into prescription pain pills. I was misdiagnosed partly because of past traumas but in the back of my head I knew something was wrong. Thatís been a big challenge of mine, people I know thought I was on drugs or drinking because of the way I walk and talk. I thought I would have to live the rest of my life in pain because of my past incidents but walking around like a drunk monkey changed all that. 1000ís of lesions that showed up on my brain during a MRI made it almost undeniable. The freaking list could go on and on. I donít want to talk myself into having this but I better learn to accept it because itís almost certain I have MS. The doc said 90% chance, that pretty good odds that I have it.

    It explains why my balance is shot, gone completely. I canít even walk across the room with a cup of coffee now without trying to throw it against the ceiling.
    Sliding down the banister of life ..........................

  11. #51
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by Humboldt View Post
    Even appreciating the need for drug development I'm appalled at the cost of a series of shots like this.

    My parents just shelled out $13,000 for 2 sets of rabies shots after seeing a bat flying around their living room and bedroom:
    The cost is insane, Iíd let myself turn into a vampire before I paid that.
    Sliding down the banister of life ..........................

  12. #52
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by Russell View Post
    My wife was diagnosed with MS in her late twenties, she's 41 now. It is a devastating disease. She did quite well for a long time but within the last year and a half has begun to get worse. I hate to see how it tears at her emotions. Depression is very common with this disease. She gets so frustrated when she can't do the little things, and I know it kills her that she can't keep up with our boys.
    Fortunately, she is still able to work and has pretty decent insurance, because I doubt she could get disability at this point. She is in charge of pricing in our local Kroger and stays on her feet quite a bit. Like Tobey said by the end of the day she looks like she is staggering drunk. She so hates to have people stare at her and feel sorry for her.
    Her diagnosis came as a complete shock. She woke up one day and realized she was having trouble seeing out of one of her eyes. We went to the ophthalmologist who diagnosed her with optic neuritis. He recommended that she immediately make an appointment with a neurologist. She had a CT scan and was officially diagnosed with relapsing/remitting multiple sclerosis. She was treated with steroids at first, to help clear up the optical problem, then we were introduced to the very expensive world of interferon based medications. She was on BETASERON for several years, but then her new doctor switched her to AVONEX. Both are very costly even with two insurance plans. Thankfully we finally looked into cost assistance and found out she qualified for free medication. She will get her meds free for two years and then they will look at our situation again. I don't see our income increasing greatly in the next two years, so hopefully she will continue to qualify. The cost of AVONEX, which is administered weekly in shot form, is about $1900 for a months supply.
    We certainly empathize with what you and your family are going through and we will be praying for you.
    It does tear at your emotions quite a bit. Especially when you want to work and itís hard to find a job when you walk like this. Iíve been fighting depression for quite a while and what really sucks is the suicide rate is high for people with MS. Iím wondering if I should get the guns out of my house to be honest. I donít wanna live like this or be such a financial burden on my family, and this donít look like its going to be a cheap disease. (like fighting any disease is cheap)
    Sliding down the banister of life ..........................

  13. #53
    Elite Member mountainman's Avatar
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    Sorry to hear that, RE. I wish there was something I could do.


  14. #54
    Senior Member Gixxer's Avatar
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    Quote Originally Posted by humboldt View Post
    even appreciating the need for drug development i'm appalled at the cost of a series of shots like this.

    My parents just shelled out $13,000 for 2 sets of rabies shots after seeing a bat flying around their living room and bedroom:
    13,000?????
    a.k.a. GSXR 750

  15. #55
    R.I.P. 2018-07-16 RoundEye's Avatar
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    Quote Originally Posted by David View Post
    ...Like marijuana?...
    I was reading through this thread and it made me think about this comment..

    I donít smoke pot, I havenít in years. But with the mounting evidence for medicinal use, I canít believe they just donít legalize it, or decriminalize it. There are some f****d up things happening in this o so wonderful government of ours.

    I classified under the same class as meth and heroin, come on man give me a break.
    Sliding down the banister of life ..........................

  16. #56
    Moderator David's Avatar
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    Tobey,

    I had a friend whose mother was on a "program" and found quite a bit of relief.

    I am presently in contact with a couple of pediatric neurologists concern my friends baby. Be assured, I will chat with them regarding near future modalities.

    Curious, have you been treated with Depakote recently?
    Last edited by David; 04-11-09 at 09:51 PM.

    Hell_Yes

    Luck is where preparation meets opportunity - Seneca

    "Anti-intellectualism has been a constant thread winding its way through our political and cultural life, nurtured by the false notion that democracy means that 'my ignorance is just as good as your knowledge.'" - Isaac Asimov

    It is my ambition to say in ten sentences what others say in a whole book. - Friedrich Nietzsche

  17. #57
    Vulans have outstanding stamina.

    Sorry, just working the legal torrents.

    Came across a Gem.

    LAN game.

    can I move this thread to the gaming forum?, no

    I'm not hidding the fact

    I'm a big tekkie, the problem is I have no tangeable proof. I drink more than most trekkies.

    Star Trek [ Starfleet Academy] no updates. It's a 7 cdrom box set.
    Back in the day of LAN games.

    Someone took the time actually, too rip the pre-mov file.
    12 years ago, game on with 15 PC's with 2 copies of the game.

    Arctitecture was the same as NFS2, "Hot Pusuit 2"

    2 times 7 is 14

    "Hot Pursuit"(c) was 6 by 2 PC's

    Lord's of the realme was 3/4 pc's on the LAN.

    All I'm sayin, is this is a game that I bought twice.

    I have 8 copies of BF1942, bought and payed for.

    Someone actually ripped this game movie all together without any reduction in the AVI format. I'm Impressed

  18. #58
    Disciple of Doom SeedOfChaos's Avatar
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    Wow Tobey, not exactly what I wanted to read coming here. My thoughts are with you, as others said, keep fighting! It's the best thing you can do right now.
    ex-WoW-addict

  19. #59
    Senior Member nightowl's Avatar
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    hey tobey,

    Try to keep positive and keep on fighting!
    Quote Originally Posted by Zilog B
    Loading the dishwasher at brembo's house means bringing the fiancee a sixpack home.

  20. #60
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    I was humbling reading along, new to forums and was thrown into reality with your post.

    I'm so sorry for your diagnosis.
    I hope this can help and not offend.
    We've lost 3 family members in the last 6 years. About 5 years ago, I had an epiphany while my Dad was dying . My house burned down with all I own in it and no insurance. When the firefighters arrived, I really didn't care about my house. My father was dying and I understood, for the first time, how insignificant those "things" were. I knew from that moment on, how lucky I was that I still had my father, even if it was only in ICU. After he died, I knew how lucky I was for the relationship he and I had (strange for a man but he was my best friend). My life changed forever; I don't get depressed or down anymore. Whatever happens, I see how it could be worse and how lucky I am. Since that time, much has tested me and it is always the same, I know how lucky I am. I hope I haven't offended, I just wanted to share how I was helped, hoping you might find something useful.
    If you need a bright side, look at all the love and sympathy displayed for you in this post.
    If Gods up there listening, He'll hear a pray from me for you.
    Hang in there brother

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