Multiple Sclerosis: Hope on the Horizon

Posted: June 16, 2010 in health, health insurance, hope, medications, multiple sclerosis, strength
Tags: , , , ,

Ampyra

Is this the medication I’ve been waiting for? The one to give me hope?

In a nutshell, this medication helps you regain leg strength. Click on Ampyra above for the full description of this medication.

My MS counselor told me about a woman with Secondary Progressive MS who is taking this. She is walking again. At this point she is re-learning how to walk. Funny thing is you do forget how to walk. When I used to use my walker I had to remind myself how to move my legs right. So, it seems this medication may work for all types of MS. I have not heard any stories for Primary Progressive, so maybe I can be the first!

Now, I do not expect miracles. Even getting back some leg strength to be able to transfer easier would make my day. Hell being able to get into bed on my own would be amazing!! So, I have a call in to my Neurologist. I am hoping he will call me in a scrip for it. We have talked about before, but I needed to do my own research on it first. This time I am not going to let side effects cloud my decision. If I get any, I will discontinue using it.

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Now, here’s the ‘nothing comes easy for me’ part. My left knee hyper-extends 20 degrees backwards. This cause lots of pain and torn meniscus issues. I had surgery some years ago to fix the tear, but last year was told it was torn again. I have not had surgery as it will keep happening if they do not fix the problem causing it… the hyper-extension [ligaments in the back of my knee are shot].

Problem, no orthopedic will do it. Reason, I have MS and am in a wheelchair so why. The insurance companies will not cover a knee replacement on a cripple. So, if I get leg strength back, what will it matter as my left leg will hinder walking for me. Now they have offered me braces. Have you ever worn a knee brace to stop hyper-extension? They are bulky and they hurt. Thanks, but no thanks. Since I’m not some sports figure I guess they figure why bother. Well I’ll tell you why…

I deserve quality of life just like anyone else. I deserve the same surgeries for this problem just like anyone else. One sports orthopedist told me that this surgery might keep me down, maybe six months, unable to move much. I about pissed myself… REALLY like that will be a big change for me. The end result might be I am able, with the Ampyra to walk again, even if I still need walking aids. I held myself together and when we left that guy and got in to the car, I cried. It was the same from the doctor that did my knee surgery.

Why doesn’t anyone give a shit about us? Why are people with disabilities treated like second, shit third class citizens? Why don’t we deserve the same chances? I’m 46 years old, I have many years left, why won’t they help me?

I am going to go back to my knee doctor once I start the Ampyra. Maybe if there is progress and he sees progress he will re-think the surgery. Oh, I have some swamp land to sell you too… notice my subtle sarcasm! rofl

I am the squeaky wheel kind of girl though. And this will end up being my new project I’m sure. Wait’ll they get a load of me…

Blessing and Hope!

Comments
  1. Judy says:

    Tracy this wonderful news! I’m in your corner with this! And I have everything crossed that I can possibly cross!

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  2. Frannie says:

    Let them know how you really feel. Let them know that you are a woman who Is determined to walk again and nothings going to stop you, and you demand some help from them, not more excuses. I’m with you Tracy and my fingers are crossed. I want this medication to work for you so bad and that your doctor listens to you and lets you have the surgery. My prayers are with you.

    (((Hugz)))
    <3<3

    Like

  3. Frannie says:

    Theres always Hope!
    And good luck with your bathroom.

    Like

  4. Missy says:

    Tracy,
    You deserve this!!! I hope it all works out for you!! Remember, you have three friends who are willing to give the doctors and insurance company a piece of our minds if they keep saying No!!! Judy, Doreen and I!!! And believe me…they don’t want to mess with us!!! LOL

    Like

  5. Ruby Cantu says:

    I got really pissed off when I read about how they treat people with disablities…up to a point they are willing to put you through one procedure after another as long as they can get money out of you…but to give you a cure or anything close to a cure would take some of their income from them.

    I hope this works for you, just don’t do like I’ve done and think you can walk all over the place….but in the event this shows promise I would love to be with you when you start taking those first baby steps.

    Love ya ;o)

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  6. Maryann Rhodey says:

    Tracy, that is such great news about the new medication. My fingers are crossed for you as well. I agree with Fran about telling the drs. how you feel. How about the American with Disabilities act? Is there anything there that can help? I can’t believe they give such a stupid excuse. I’m on your side all the way. You are a fighter and I know something good will come out of this. Keep pushing. All the best to you!

    Like

  7. Deb Darby says:

    Dear GOD, this is so exciting! I’m in tears, Tracy reading that our prayers could be answered in a small way with this new medication! What fantastic news for so many people. Stay your same “Squeaky” self that Roger loves How cute that you call Ruby “Skippy”! Squeaky and Skippy, what a team!
    Love, Deb

    Like

  8. Teresa says:

    Bear with me. I have just be told the diagnoses. Primary Progressive. i’ve suspected something for 3 years. I’ve gotten use to the idea (somewhat). Can’t change a thing. But.. I want good meds and the chance to do more. I will continue to read these posts. Ladies, I applaud all of you.

    Like

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