Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"


Sunday, February 20, 2005

Just for general information

Pearls and Dreams

I have had several emails asking me for more details about the myasthenia gravis, lupus, my other diagnosis's and their treatments.
So, this posting is simply for that purpose ...and if you're not interested at in this, skip down to my previous post about the Skeptic's Circle.

Myasthenia Gravis is a neuromuscular autoimmune disorder that effects the voluntary muscles (if you can control the muscle, it is effected).Antibodies have attacked the muscle receptors, plugging them up, & or destroy them so they don't get enough of the chemical the nerves send down from the brain telling the muscle to move. I have what is referred to as generalized myasthenia gravis, and at one point, was concered a 'brittle myasthenic', although, that was somewhat of a misnomer because of the severity of my eating disorder. I think I only had 2 crisis' that were truely myasthenic in nature, not eating disorder triggered myasthenic crisis'.
On any given day, I could have drooping eyelids, double vision, difficulty chewing, difficulty swallowing (don't serve me coffee that's too hot, by the third drink, it's going up and out my nose instead of down my throat where it belongs!)shortness of breath, my arms may have difficulty brushing my hair/teeth and may or may not want to hold onto a gallon of milk. Walking, can be very difficult on these weak days, as my quad muscles decide to give out before the calf muscles will. I have days every month, that I am dealing with most of these symptoms to one degree or another.

Myasthenia Gravis is treated by a drug called Mestinon, it is also used in surgeries to bring people out of the drug induced paralysis that is necessary for surgery. It gives the muscle a longer chance to absorb the chemical that allows it to move. There is a much longer explination of that ...that's the short version. The typical myasthenic will take between 240 mgs a day and 360 mgs a day, although up to 1800 is safe. the problem is, the side effects are so severe, few can go past the 360.

Myasthenia is also treated with immunosuppressants that are used in organ transplant patients. These drugs are powerful, high risk drugs. They carry the risk of frequent infections and cancers. Especially skin cancer (see my december posts as I came face to face with a melanoma on my face!). They treat the disease by lowering the immune system, which also lowers the bad antibodies that are effecting the body. Cellcept, Imuran, Cyclosporin are in this class.

Myasthenia is also treated with the use of high dose prednisone. Anywhere from 40 to 100 mgs is not uncommon for a myasthenic to be on. I'm really not sure why prednisone works for MG.

Myasthenia is also treated with IVIG, Intravenous Immunoglobulins. This is donated blood that has been treated so that it only carrys the immunoglobulins from healthy people. The theory, is to flood the system with health IgG's and the unhealthy ones won't turn on.

Myasthenia is also treated with plasmapherisis ... simple way of putting it ...when I had it several years ago, we explained it to our 7 and 9 year old kids as "Mommy is having her blood taken out, and her blood washed and put back in nice and clean"
It's a blood transfusion, where they remove the plasma and replace it with either artificial plasma or with donor, healthy plasma.

Myasthenia is also treated by removing the thymus gland. When I was diagnosed, they said it had a 60% chance of putting me into remission. While I was IN the hospital recovering from the transternal thymectomy, (like open heart surgery only they don't touch my heart) a new study came out saying 60% total would be helped by the thymectomy ..some would simply stop progressing, some have improvement, some go into remission, but not many.

Myasthenia gets worse with repetative motions, the more you use the muscles, the weaker they get. The weaker they get, the harder you have to work to use them, the harder you have to work to use them, the more worn out they get and a vicious cycle is born.


I'm on Mestinon, but a much higher dose than most, 600 mgs a day, I tolerate it very well, but I am also not symptom free even on this hgih dose.
I'm also on Cellcept.
I have used IVIG in the past ..too many side effects from feeling like I had the flu every month to aseptic meningitis 6 times in the 5 years that I got the treatment.

I liked the plasmapherisis ... 5 days, over, 6 months of help. My neuro sees it as far riskier than I do. I bow to his expertise.

My entire diagnosis & medication regimine is:
Myasthenia Gravis
Lupus,
Insulin Resistance
Asthma, Allergies, GERD, Pyloric Spasm, ED-NOS, hyperlipidemia
Mestinon 600mgs a day
Cellcept 3000 mgs a day
Prednisone 5 mgs a day
Celebrex 600 mgs a day
OR
Bextra 20 mgs a day
Ultracet
Zyrtec D
Prevacid 30 mg
Topomax
Ambien
Advair
Atrovent
Prozac 60 mg
Fortamet (metformin)
Vytorin

I think, I'll save the lupus for another day, if anyone is interested.

8 comments:

  1. Thank God that is what you bear, but not what you ARE.

    Blessings to you...

    ReplyDelete
  2. That is so true!

    It effects everything I do, every decision I make, however, it doesn't not control me. Not anymore.

    I definitely give God all the credit, he's given me wonderfull doctor's who understand this illness (not an easy thing to find)
    and there are new medicines coming out all the time. On my MG mail list right now, there is a discussion of 'pre -cellcept' and 'with cellcept' capabilities.

    I guarantee you, 3 years ago, when I was on Imuran, I could not have done what I can do now!
    I'm not a big fan of drug companies but Roche has my enternal thanks for changing my life and enabling me to better serve my church, my family, and my God.

    In the 15 years that I've been sick (diagnosed properly for only 13 years) I've seen 3 medications make a HUGE difference in my life ...
    Me ... Mestinon & Cellcept
    My son ... Risperdal for his tourette's syndrome. I'll have to post on that story another day.

    Good to 'see' you Wilsonian!
    I was drinking that tea you sent me yesterday, thinking about you.

    ReplyDelete
  3. Wow! I had heard of MG, but had no understanding of it. You put it so clearly.

    Just thinking about this, leaves me speechless...though I have no words, please know you have my heart!

    And yes I'm interested in the lupus. I imagine you'll blow away some of what I think I know about it.

    hugs to you!

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