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Old 01-19-2011, 09:59 AM #11
dcrowle12000 dcrowle12000 is offline
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Default This is me

I started a personality change at 15 and found myself wandering the town looking for energy. I started work went through college and struggled the whole way.......I found myself constantly exhausted and not clear at all so school was enormously hard to be a part of. I went to mental health a fews years back took some pills and got even worse and finally collapsed.

My last job my legs burned, lost control of my physical attributes (like a 95 year old man) and just got worse when put on anxiety pills. I collapsed finally and a doctor recommended I go get a sleep test. I found out that I have for the most part central apnea and it has devestated my life.

The more and more I failed the more likely I was to lie about who I was and everything else because a sense of feeling like a looser. I could not handle confrontation because not clear to what was going on and just got worse and worse with exhaustion...................

I got the machine and excercise seem to be turning around and now going to counselor; however, I have lost everything that was important to me. My central apnea or sleep pattern was severe no rem sleep in either study. i am now going back to school at 55 and trying to save my marriage at the same time, I need people to talk to that might have felt the same way or can understand me a little. My physical problems have gone away including difficulty with reading, pain in legs, lack of control ; however, the exhaustion is still somewhat there............dcrowle12000@hotmail.com
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Old 04-24-2011, 10:56 AM #12
Charles Rosen Charles Rosen is offline
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Wink MG & Sleep apnea

Quote:
Originally Posted by GI6607 View Post
I have placed a thread on the Myasthenia Gravis site, but thought I would share on this site as well....I was diagnosed with mild sleep apnea in the early 90's as I took a sleep study at a Desert Storm physical. I was diagnosed with Myasthenia Gravis in November of 2006, three months before retiring from 41 years of military service. My apnea has gotten much worse in the past year. I have had two sleep studies in the past month that diagnosed central and obstructive sleep apnea and received my Bi-Pap last week. The physician has started me off with a pressure of 10/18. I have documents from Mayo Clinic that state that Myasthenia Gravis can be a cause of central sleep apnea. Has anyone else had diagnoses that suggest that a neurological disease/disorder can cause central sleep apnea?
Dr Wayne Rubinsteins
Advocate Lutheran General Hospital, Park Hill Iliinois
Ask for a copy of hid presention
Fatigue, Sleep and MG

Good Luck
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Old 05-27-2011, 11:29 PM #13
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Originally Posted by GI6607 View Post
Thanks for the good wishes! I have just started to work with the VA as myasthenia gravis is a presumptive condition for Gulf War vets. The big challenge is going to be convincing them that the central sleep apnea is caused by the nerve disease. It may work out as my Desert Storm physical diagnosed sleep apnea shortly after the Gulf War. I started my military career as a scout in the infantry on active duty in February, 1966 and retired 1 Feb 2007 as a Colonel in the Army Reserve. It was a long career, but very rewarding as I got to meet and work with the best people in the world. Take Care!
Hey GI6607 no need to prove service conection of apnea if recorded in military durning physical that would be your proof and I believe it's rated at 50% contact your local dav rep (I lost trust in American Leigon) and they will help you thru the process good luck with all!!
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Old 05-31-2011, 09:52 PM #14
litehouz litehouz is offline
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Unhappy Myasthenia Gravis

I have known that I have Myasthenia Gravis since June 2007.
Now I suspect that my fatigue before 2007 was from MG.
I was in Kuwait and Iraq in 2004 with the US Army. I will retire on permanent disability on 05 June 2011.
My biggest problem now is the tooth decay that the immunosupressents cause. My immune system is deminished and the bacteria causes havoc in my mouth. Yes, I brush,floss and use a germ killing mouth wash twice a day.
I've been on Imuran since 2008 plus regular PLEX treatments.
I've adjusted to the fatigue and my limitations but this dental thing is really bumming me out.
I'll get through this I know but this is my current challenge.
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Old 06-02-2011, 01:19 AM #15
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Wink Hello and Welcome to NeuroTalk!!


litehouz,

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways. Please keep us up to date. Check out the following for some assistance from the gang:

http://neurotalk.psychcentral.com/forum89.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Old 06-09-2011, 07:16 PM #16
sjant71 sjant71 is offline
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Default so sorry

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Originally Posted by perfectlypeg View Post
in one night. My sleep onset time is 30 seconds. I fall asleep everywhere, even while on the toilet and even standing in front of the refrigerator. I am on oxygen which has helped the most. Bipap didn't work well. I haven't been rechecked since my two diagnosis a year apart 2005/2006. Quite frankly I am really scared. It was after I received the diagnosis and they told me I shouldn't expect to live past six months that I began staying up as late as I could because I was afraid to fall asleep. I sleep on the couch because when I sleep in the bedroom no one checks on me and I can sleep for days on end and my husband just lets me stay there. I do not have a supportive home life. I wasn't diagnosed for five years even though I went to doctor to doctor complaining of EXTREME fatigue and falling asleep at weird times. They just kept calling it empty nest syndome. I knew better, but never thought of central sleep apnea. I also do not make ennough cortisol or ACTH, the pituitary hormone. I also have an extreme immune deficiency. Which came first? Who knows. To be ill with four illnesses and having to see all those specialties as well as any labs and MRI/EKG, etc. etc. I do not have enough time or strength to see all the doctors that I need to see. You know the ones. That will see you a few appointments because they don't believe you have what you say you have and they are going to prove you are crazy. but the labs come back confirming as they studder while sending you packing because they don't have a clue.My last neurology appt didn't even last one whole visit as he was screaming at me that I should have never been referred to him and that it was irresponsible for the other doctor to send me and was absurd that I even would come because he didn't have the expertise in Central Sleep Apnea. I gathered from his yelling at the top of his lungs that he wasn't about to learn about it either. In the past three years 90% of my doctor appointment have been first visits where the doctor refused to take me as a patient. So I am very low on doctors at the present time. I have been on IV infusions monthly for the immunity problems.
Regarding my sleep apnea, the sleep doctor explained it like this. "Out of a 60 minute hour, I am not breathing 40 of those minutes." Its no wonder I can't stay awake. Presently I take stimulants to wake me up, but the dose is large and it is barely getting the job done. I maybe get what I call a window of about two hours per day of alertness, but not sustaining alertness. It only lasts for as long as I am awake. Tomorrow I start over.
I don't think I have that MG, though I don't know whaT IT is.
Perfectly Peg
I'm sorry you had such a bad experience please know whoever you were referred to must not have been a board certified sleep physcian. ANY sleep physcian that is board certified can treat CSA if you go to the american academy of sleep medicine web site they have a directory of certified labs who will have a doctor on staff that can help you if you are lucky you may find a lab near you that has a neurologist on staff who is certified in sleep medicine good luck to you
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