ccmg
04-13-2005, 12:16 PM
I'm a 36-year-old female with a variety of problems. My journey started in Sept 2003 with a positive diagnosis of Myasthenia Gravis. My blood work came back from Mayo in the very high positive range. My only symptoms at the time were double vision and occasional mussel weakness and fatigue. In December of 2003 I was admitted into the hospital ICU with an acute MG attack. I was given IVIG and high dose steroids. After leaving the hospital I was back within the week with the same symptoms. To make a very long story short, I've been admitted to the hospital off and on for the last year and a half. My symptoms have ranged from double to no vision, no mussel movement to limited movement, mussel spasms, numbness, what I like to call the traveling chill bumps, neck and respiratory weakness, and voice and swallowing issues. I've been everywhere in the country except MAYO (scheduled for this summer) I've had cellcept, IVIG, prednisone, plasma exchanges, and respiratory therapy. This Jan. all of my blood work was rerun because I can no longer swallow and limited vocal range.I'm told I now have nerve damage (of unknown origin) from the top of my palate to my vocal cords. My MG blood work is now negative, my ct scans are neg., spinal tap neg, mussel bio. neg., I've been tested for every infectious disease at least twice by more than one lab, and more than one doctor I see one of the top neurologists in the country and he hasn't a clue as to what is wrong with me.
In short I'm 5'9 and use to weigh 153lbs, and was very active and always an athlete. I'm now 110lbs. very fatigued and scheduled to have a feeding tube installed next week. My quality of life now sucks. I'm frustrated and angry at the whole process. And yes I've been eval. by every psychology dept. at every hospital that I've been to and passed with flying colors. I'm tired of being sick. Does anyone have any ideas for me?
:confused:
In short I'm 5'9 and use to weigh 153lbs, and was very active and always an athlete. I'm now 110lbs. very fatigued and scheduled to have a feeding tube installed next week. My quality of life now sucks. I'm frustrated and angry at the whole process. And yes I've been eval. by every psychology dept. at every hospital that I've been to and passed with flying colors. I'm tired of being sick. Does anyone have any ideas for me?
:confused:
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Kali M
04-14-2005, 10:41 PM
Wow. Ideas? Not really. Sympathy? ABSOLUTELY. How did your tests turn negative after already being positive? That's strange. But, I don't rule out any possibility anymore (i.e. I think tests can be incorrect; or that problems can elude the tests that are designed to pick them up). What did the neurologist say about your formerly positive tests turning negative?
The only things I can think of are:
(1) try another neurologist (Sounds like you will if you're headed to Mayo Clinic)
(2) try to find some texts on MG at the closest medical library (best if associated with a large university). Usually these libraries are available to the public, even if you won't be able to check the book out. (And I don't know if you'd have the energy to go do all the research). Your other option would be to buy a medical text on MG from a website bookstore. They're expensive and difficult to read, but available.
(3) There is a website[ please do not post search instructions to find websites - if a website is allowed, you can get permission from moderator1 to post the link - search instructions are not necessary for an allowed website - do not post any kind of information to find a website not allowed to be posted ]
(4) There seems to be a good MDA clinic at Duke University's Medical School. Might want to search their website.
What is the possibility this could be something else like Lambert-Eaton Syndrome or a muscle myopathy? When you say your original blood work came back positive, what tests came back positive? Was it just muscle enzymes? If this was a muscle myopathy a muscle biopsy may pick up the problem, whereas all other tests could be normal (though muscle enzymes are usually increased).
The change in your lab tests scare me. I've been dealing with some very strange symptoms for the past 5 years that got better for a short time, but are now returning, and I'm trying to figure out what it might be and who I might need to fight for a referral to go see. If your tests were positive and now are not, what's to say someone else might have MG and their original test be negative. Scary.
Good luck to you. Please keep your hope and please post again to update us on what's going on. (PS - if you correspond with me via the board, don't take it personally if I don't write back; I come here very infrequently due to hectic schedule!)
Kali M
[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
The only things I can think of are:
(1) try another neurologist (Sounds like you will if you're headed to Mayo Clinic)
(2) try to find some texts on MG at the closest medical library (best if associated with a large university). Usually these libraries are available to the public, even if you won't be able to check the book out. (And I don't know if you'd have the energy to go do all the research). Your other option would be to buy a medical text on MG from a website bookstore. They're expensive and difficult to read, but available.
(3) There is a website[ please do not post search instructions to find websites - if a website is allowed, you can get permission from moderator1 to post the link - search instructions are not necessary for an allowed website - do not post any kind of information to find a website not allowed to be posted ]
(4) There seems to be a good MDA clinic at Duke University's Medical School. Might want to search their website.
What is the possibility this could be something else like Lambert-Eaton Syndrome or a muscle myopathy? When you say your original blood work came back positive, what tests came back positive? Was it just muscle enzymes? If this was a muscle myopathy a muscle biopsy may pick up the problem, whereas all other tests could be normal (though muscle enzymes are usually increased).
The change in your lab tests scare me. I've been dealing with some very strange symptoms for the past 5 years that got better for a short time, but are now returning, and I'm trying to figure out what it might be and who I might need to fight for a referral to go see. If your tests were positive and now are not, what's to say someone else might have MG and their original test be negative. Scary.
Good luck to you. Please keep your hope and please post again to update us on what's going on. (PS - if you correspond with me via the board, don't take it personally if I don't write back; I come here very infrequently due to hectic schedule!)
Kali M
[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]
ccmg
04-23-2005, 11:00 PM
Hello,
When I say my original blood work, I mean everything came back in the high positive. There are three major blood test for MG all were in the high positive range at least six times by two different labs( one lab being MAYO).
My feeding tub is now in. Don't recommend it to anyone unless it’s absolutely necessary. I'm trying to keep a positive attitude but it really is turning into a sarcastic one. :rolleyes:
My main neurologists has the brilliant idea that I may have had one of the numerous polioviruses and I'm stuck with the neurological aftermath. Doesn't fly with me. If so why, does it flare when the weather gets warm or I get stressed? Why do I still suffer from fatigue? He can't answer that. So, I'm going to see neurologist number 6 next week. I'm not willing to give up and say I'm stuck like this yet. I'm too hard headed.
As for Duke been there done that, they don't know what I have either. They just say, autoimmune related, stay on an autoimmune suppressant. Be happy with that.
As for research, I own just about every book in print and out of print on MG all they have done is add fuel to my fire, I feel like throwing them at every neurologists I see and asking, have you read the book since medical school?
Don't worry about not answering, I use this more as a sounding board than anything else. I pay a neurologists 350 a week, a pshy. 180 per week plus god olny knows with blood wokrk and hospital bills. This is one of the few places where you can say what you feel without worrying about how someone is going to take it.
When I say my original blood work, I mean everything came back in the high positive. There are three major blood test for MG all were in the high positive range at least six times by two different labs( one lab being MAYO).
My feeding tub is now in. Don't recommend it to anyone unless it’s absolutely necessary. I'm trying to keep a positive attitude but it really is turning into a sarcastic one. :rolleyes:
My main neurologists has the brilliant idea that I may have had one of the numerous polioviruses and I'm stuck with the neurological aftermath. Doesn't fly with me. If so why, does it flare when the weather gets warm or I get stressed? Why do I still suffer from fatigue? He can't answer that. So, I'm going to see neurologist number 6 next week. I'm not willing to give up and say I'm stuck like this yet. I'm too hard headed.
As for Duke been there done that, they don't know what I have either. They just say, autoimmune related, stay on an autoimmune suppressant. Be happy with that.
As for research, I own just about every book in print and out of print on MG all they have done is add fuel to my fire, I feel like throwing them at every neurologists I see and asking, have you read the book since medical school?
Don't worry about not answering, I use this more as a sounding board than anything else. I pay a neurologists 350 a week, a pshy. 180 per week plus god olny knows with blood wokrk and hospital bills. This is one of the few places where you can say what you feel without worrying about how someone is going to take it.
frustrated grl
05-17-2005, 10:01 AM
I too am sorry for what you are going through. I have had double vision for almost two years now and they have no idea why either. Although mine started when I was about 7 months pregnant. It can be sooo frustrating when no one has answers and we just have to go about our lives as normally as possible. I really hope they can find out what is wrong - and get you off the feeding tube.... I don't even want to imagine how bad that is.
Good luck!
Good luck!