This is so cool!

Discussion in 'The Watercooler' started by flutterby, Sep 3, 2010.

  1. flutterby

    flutterby Fly away!

    I started Mestinon for Myasthenia Gravis a week ago. I used to be able to do about one thing, maybe two a day. When I had appointments and running around, I would be down for days after. A trip to the grocery store would put me down for days. Often, I was too weak and exhausted after I got home to put groceries away - would just put away the fridge/freezer items and leave the rest out.

    I just got done cleaning and I cleaned for 3 hours! And hard, deep cleaning, too. Before, if I ran the vacuum, I could barely stand and I couldn't use my right hand/arm for about an hour or so after - I couldn't even turn a doorknob. And look at this - I'm typing a post! My brain isn't foggy from the fatigue and I can actually think (something else that used to go when I overdid it).

    I'm so excited I can hardly stand it.

    My physiatrist is ordering a chest CT to check my thymus gland as it plays a big role in MG. He's also doing a brain MRI with-contrast to rule out MS. He doesn't want to diagnosis something and then let it go and miss something else. Then he's going to send me to a neuro who specializes in MG for a second opinion and to make sure I'm on the proper treatment plan. However, he wants to continue to treat me - he said I would probably only see the neuro once. I've had so many contradicting diagnosis's, whatever, from specialists that it worried me and I asked him - what if I see this neuro and he says I don't have MG. He said that we won't believe him. The mestinon is working and it wouldn't be doing anything if it wasn't MG. I love this doctor (and it's not only because he's cute and not married :tongue:).

    Happy day!
  2. KTMom91

    KTMom91 Well-Known Member

    I'm so happy for you! Glad the medications are working so well. Many, many hugs!
  3. nvts

    nvts Active Member

    OMGosh! That is so wonderful to read - you are just so full of happiness! I think I'm living vicariously through you. Everyone here (and I mean friends, neighbors, relatives, perfect strangers) just seem so angry and defensive - it's like the entire town has PMS - male and female!

    This post was the breath of fresh air that I really needed! You enjoy your cleaning and shopping etc., just remember to stop and smell the roses (gosh, I remember when even THAT would knock you out!).

    Live on baby, Live on!!!

  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I am so glad something is finally working so well! Make sure you contact your attorney and let them know about your diagnosis and this new doctor so they can get these records for the SS people.
  5. Hound dog

    Hound dog Nana's are Beautiful

    AWESOME!!!!!! Thrilled to death for you!!!:D
  6. Shari

    Shari IsItFridayYet?

    Heather, I am so incredibly happy for you....this has been so long in coming, and I never dreamed a few doses of a single medication would give you this much of your life back. I'm amazed and thrilled and thankful for this doctor.
  7. Lothlorien

    Lothlorien Active Member Staff Member

    That is really fantastic. I'm so glad for you that the diagnosis is really something you can treat and the treatment is working for you. What a relief it must be to finally have some energy and also for someone to finally believe in you. I'm truly happy for you.
  8. DaisyFace

    DaisyFace Love me...Love me not

    O Heather--

    This is some great news! I am so happy for you!
  9. crazymama30

    crazymama30 Active Member

    How awesome, I cannot even imagine your relief at not only seeing the light at the end of the tunnel, but living in it!
  10. trinityroyal

    trinityroyal Well-Known Member

    Heather, I too am so happy to hear how well the new medications are working for you. I can "hear" the energy--and the joy, and excitement--in your post.

  11. flutterby

    flutterby Fly away!

    The neat thing about this medication is it starts to work immediately. There is no cumulative effect with it, though, so you have to take it several times a day. The best comparison I can use is like taking Advil - starts to work within 30 minutes, but wears off. Now, this drug isn't an analgesic - it stimulates the body to create more acetylcholine which is what is needed for the nerves to "talk" to the muscles. Marg can explain it much better and did on my other thread.

    Because of years of undiagnosed MG, my body is deconditioned. And I'm feeling that today. LOL But, I'll take sore muscles any day over no muscle strength (or very limited) at all. It just means that I'm building back my muscles. :)
  12. nvts

    nvts Active Member

    Don't forget to "eats your spinach" Popeye!

    This is so much fun reading these updates! You're brightening my days whether you know it or not!

  13. AnnieO

    AnnieO Shooting from the Hip

    I'm just grinning from ear to ear, Heather!!!

    I am SO GLAD that your doctor figured out what was up and got you on the medications. It sounds like you actually were enjoying cleaning! I'm just thrilled to hear this.

    YAY!!!! GO CUTE SINGLE doctor!!!
  14. flutterby

    flutterby Fly away!

    Thank you, ladies, for everything. This has been a long, hard road and the relief I feel is...well, I almost feel manic I'm so happy. :D

    I *do* enjoy cleaning. I always have. I've always been a bit Obsessive Compulsive Disorder (OCD) about my house and I haven't had my home the way I want it in over 6 years. So, this makes me very happy. :D
  15. nvts

    nvts Active Member

    Well, if you have THAT much energy, I know of a house in New York that can really use some attention....

  16. Wiped Out

    Wiped Out Well-Known Member Staff Member

    This post made my day!! I'm so happy to hear you are feeling so much better! Now, when you get done with your house, and then Beth's, head on over to Wisconsin-please!!
  17. Star*

    Star* call 911

    you go you merry maid you!!!!!!!!!!!!!
  18. flutterby

    flutterby Fly away!

    Alright ladies, you'll have to get in line. :tongue: Gcvmom hit me up first (if she forks over the plane ticket ;) ), then my mom's friend, then Beth, then Sharon. Geez. I'm going to be busy!
  19. ScentofCedar

    ScentofCedar New Member