IRGATPLAY, question for you,

Discussion in 'Fibromyalgia Main Forum' started by elliespad, Nov 16, 2006.

  1. elliespad

    elliespad Member

    I know you're on this message board for your son, and not yourself, so I'm sorry if this is something you don't want to answer and I respect that.

    I see in your profile and in another post, you make reference to having "had" Myasthenia Gravis". This is not something to get cured of easily or often. Do you no longer have it? If not, can you say what you did to be cured? And after which pregnancy? I'm always trying to figure these DD out and make connections. Just curious, and if you don't want to answer I understand and apoligize.

    elliespad
  2. lrgatplay

    lrgatplay New Member

    I just saw this, and will get back later. I'm at work.
    No problem talking about it.
  3. lrgatplay

    lrgatplay New Member

    Is also an auto-immune disease. Falls under Muscular Dystrophy, don't know why though.
    Chain of events is, I never or very rarely got sick. Only twice I can remember above the age of 14.
    I was on birth control (early 80's) and got off because didn't seem good to messing with missing pills and getting off schedule and generally not being consistant. And my current husband and I wanted to try natural family planning. But after I stopped I had dysmenorea (sp) for almost a year.
    Then in and around that time, I had strep throat (right when we were going on a vacation trip) got penicillin and went about my business. Started feeling better from strep while in California, but also noticed I was having trouble swallowing.
    Didn't think much about that, just getting better from strep, cause I didn't have it before that I know of, so wouldn't know.
    Sorry this could be long. I've got a second wind. The house is finally getting quiet enough for me to concentrate at 11:30 PM.
    Got back home and the swallowing problems just didn't go away and gradually got worse. Saw doctors who couldn't find anything wrong. Barium swallow showed nothing.
    Soon I was having other problems, can't remember the exact order but included weakening of my eyes so that I had double vision, sporadic weakening of my arms such that they would just collapse if I was carrying something. Started losing my facial muscle control as well so could not form a smile or generally move my face. Couldn't talk well and lost volume as well as muscle control in my tongue.
    Had been to several doctors and even had one tell me I needed a head doctor.
    Everything of course continued to get worse and I'd been researching it and came up with Myasthenia Gravis. The internet was not available then.
    Found a doctor (who I still have) who gave me the test for MG, which came back, negative.

    Anyway I continued to have the same symptoms, along with sinus infections and such I'm sure where caused by the difficulty swallowing. That made things worse.
    Still, my husband and I decided to go ahead and try to have a baby. I'd gotten my monthly's back for quite a while and with the Natural Family Planning we got pregnant in one try.
    Pregnancy went fine, had a period of bleeding once, until I suddenly got really sick. I had to leave work, which up to then I never did. I have very kind employers, who I still have, and are also seeing me through this with my son.
    I couldn't eat for awhile as I absolutely could not swallow without asphysiating it or choking. I felt awful.
    This was during the first trimester. I recovered enough to go back to work in a few days. I always pushed myself through it. Husband not much help. Rest of pregnancy went okay, the baby didn't move much, but if it had transient what I had, that would be case. I was still weak. I lost maybe 5 or more pounds during that episode and weighed less after pregnancy than before.
    My daughter was born in May, and was immediately wisked away from me. Since MG was undiagnosed in me, she also got negative test result. She had a bad heart and the lack of movement had made her all contracted. They knew something else was wrong, but couldn't find anything, even with muscle biopsy except they suspected some type of chromosonal disorder. Even though I felt I knew what was really wrong, I didn't know how to get her treated and would have liked to take her somewhere else. But in the end, and with her heart problem, we eventually were convinced that she could not survive and we took her off life support at a little over 2 months of age.
    Of course I continued to get worse after that.
    Continued research told me the test was flawed, and I needed a different type of test. Very expensive for me and not available. I set myself up with a clinic in Kansas City for MG and they eventually ordered the test, which was proformed at the Mayo Clinic. HMO wouldn't cover it of course.
    Completely positive.
    Left my husband about this time, he was no help at all as I continued to work and support us mostly.
    Gotten worse then with infection to the point where I told my doctor I should just jump off a bridge. Not meaning to do anything but get his attention. I was hospitalized on IV for a week. At this time it was recommended that I have surgery to remove my Thymus. It seems that other young women who developed MG had recovered after this, but only the young ones.
    It worked as I gradually started to get better, no more double vision, although eyes are still weak. Still have some trouble swallowing, stuff just hangs up down there.
    Tongue still looks funny and I still talk funny. Kids will ask me why I talk funny. My husband now says that it takes about 7 years for every cell in your body to regenerate, so maybe I'll continue to improve. And so will the rest of you and my son if only we can find the right switches. Like the thymus, I still haven't figured out how that worked or why I can do okay without it.
    I have never been any good about taking care of myself, but I realize that with my sons illness, I am starting to feel worse. I'm so stressed and on top of years of stress generated by my current husband. He is TOXIC. I still smoke, never guit despite 3 pregnancies and the MG. Not good for me and especially not my kids. But I can't seem to break it.
    So, I'm finally calling for some take care of myself time too while taking care of my son. I'm gonna need the strength. I've told my work I'm reducing my hours.
    I've ordered some heavy duty womens formula vitamins and I'm trying to clean up my diet as well as his. And the whole families in smaller stages. And I feel if I feel better I'll be able to kick the smoking habit. I've put my foot down on my husband. But he is tremendously difficult. We are also having to file for bankruptcy. We will lose our house, but luckily never sold, only rented, our old house so we'll have to move back there. But I feel bad cause we'll have to make our renters move.
    Sorry I quess I needed to get that out. I do see lots of similarities to how we got these random things and in what fashion it plays out.
    Hope you're not sorry you asked.


  4. lrgatplay

    lrgatplay New Member

  5. elliespad

    elliespad Member

    What an amazing story, for many reasons. I am so sorry about your daughter. And that your son has to be so sick. I am AMAZED that you were healed by removing your Thymus. I've read about that as a treatment option, but never knew anyone who had it.

    My mother was Dx. with Myasthenia Gravis for the last 20ish years of her life. Tested mildly positive to Tensilon. Treated with Mestinon. She never did well.

    It sounds like you have a lot on your plate, but also that you have a path to follow, for the house, your smoking, your eating habits, your finances. Is a lot for you and I hope things get easier. I have a friend who also lost a house, a single girl at the time. It didn't go to foreclosure, but she did sign the house over to the bank. It never hurt her credit and she bought another house a few years later.

    And as for bankruptsy, I can't tell you how many people I know who have had to file bankruptsy. Hell, even poor Donald Trump had to file on one of his buildings a year or so ago, poor man. (I'm of course, mocking here.) It will give you a much needed relief and a chance to start over, so try to view this as something positive.

    Sorry to take this long to respond back, but I was out most of the day, and I somehow missed it yesterday. I will pray for peace and healing for you and your family.

    elliespad
  6. lrgatplay

    lrgatplay New Member

    Thanks for asking. I'm just lucky it worked, for it was miserable and I so feel for you all and wonder where these doctors heads are. Sorry about your mother. I never did well with the mestinon, hyper sensitive and made me twitchy in the gut and muscles. Switched to steroids which I stayed on for a while after the surgery.
    I also exposed myself to pesticides. The fogs while growing up. And the dusting for flea infestation in a rental house.
    Don't remember exactly when that was, but think it was just prior to the MG or about the same time. I think some pesticides (I used sevin dust) effect the nerve muscle junction. I wonder if that stuff just stays in your system or crosses placenta. Viruses too. If we'd stored up viruses do you think they cross the placenta?
    Nice to meet you.
    Hope for you.