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MG & Sleep Apnea, other ?s & thoughts
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Hello Group,

I am wondering if any of you with MG also have sleep apnea, or had your neurologists recommend you go for a sleep study?? IF you do have both MG & Sleep Apnea, how did your doctors come to that determination. It seems that the symptoms for both conditions are quite different...

Why am I asking? Well... My neurologist sent me for a consult with a so-called MG specialist, who questioned my diagnosis of MG based on the fact that there were missing lab results for the antibodies tests. My symptoms all DO point to MG, but I didn't have any qualifying results on my EMG or SFEMG. The MG specialist said that if the antibodies test results come back positive, then we would move ahead with discussing treatment options for me and MG. But in the meantime, wanted to rule out other possibilities. So, as a result of undergoing a sleep study, I found out I have sleep apnea. I do not know the severity or type at present, and have to make a follow-up appt with the sleep specialist who also deals with pulmonary issues. My regular neurologist seemed almost giddy or thrilled with this info and said this could explain quite a few of my symptoms. He said that in treating the sleep apnea my other symptoms could improve. Now, having done my homework on sleep apnea, I kinda beg to differ. I do NOT have many symptoms of the effects of sleep apnea... so I am curious to see what the sleep specialist says. Unfortunately for me, here went yet another neuro appt without treating the difficult MG (or MG-like) symptoms I am dealing with. Anyone with MG and Sleep Apnea?

I have a long list of MG symptoms, the worst of which is my CHRONIC complaint of respiratory issues... the closed-throat, coughing, loss of voice and vocal quality *if i talk for more then a few minutes my voice gets raspy and i start coughing*, the choking, difficulty swallowing & eating. The weakness of so many different muscle groups. the Ptosis. I have ALL the symptoms. And then some that may or may not be related. I don't know! Anyone get muscle cramping, twitching, pain?

Maybe I will post this next question as a separate issue, but I AM wondering if anyone experiences weakness with bladder/bowels/stomach as a result of MG as well??? I think I get sick from the pyridostigmine/mestinon itself and end up vomiting and with diarrhea as a result fairly often... But I wonder if anyone experiences loss of bladder control while vomiting? Wondering if that has to do with the muscles and MG or a different issue? Any similar experiences or ideas?

My neuro is keeping me on the mestinon 60mg/3x daily. He also now has me starting clonazepam 5mg before bedtime. I am not sure what that is supposed to help... I was given diazapen before to use as needed to help relax my muscles and help with anxiety but I rarely used it. I have to do more research about the clonazepam. Anyone familiar with that?? I feel so defeated after this last appt. I keep hoping for a confirmed diagnosis and treatment and every time I leave with more confusion and less certainty. I even brought a typed list describing ALL my symptoms and anything that might be related (or not) to help my neuro better figure things out... He thinks I DO have sleep apnea and need to follow up with the specialist. He says I DO present symptoms of MG, or things that don't add up to sleep apnea or other conditions, so we need to see what comes back from the lab results. He wants me to follow up with my endocrinologist (who I see for diabetes, and PCOS), to have other tests done for things that could be causing my symptoms.

I wish I had more answers. I wish I could just get a list of exactly what is wrong with my body besides conditions I am already aware of. Right now I am struggling with the positive/optimistic outlook I was working on maintaining. I just want to cry and throw my hands up at the moment. I need to know what's wrong with me! I want to feel better--- I've been suffering with the respiratory issues for over a month now, and was in the hospital for it too. Why won't anyone treat me for these issues?? They can hear my voice and cough, feel the tension of my throat... but yet no help!! I have compensated for myself @ work, taking work home with me despite feeling exhausted and weak--- bc I have no other options. I have no support system or anyone who will be helping keep a roof over my head or pay bills. My fiance is another country and I won't be moving there for a while so I have to manage for now. I am just getting so frustrated. He is very supportive, but can't help me more then emotionally because he's in another country... My parents are deceased, no siblings...And I'm a New Yorker. So friends and extended family are not often available or they don't make the efforts to get together, visit me in the hospital, take me to a doc appt. Some I can't even get a phone call from bc people are wrapped up in their own nuclear worlds. It's tough. I have my fiance, but I don't want to burden him and have him always worrying about me. It sometimes makes me think, WHY do you want to marry me when I am so sick? One time he asked me if I thought i was going to die on him. I cried. I am 30 years old... engaged to a wonderful loving man, and THIS is what we're talking about. Damn.

I'm tired of being patient while suffering. My social life has become non-existant. I may feel good in the moment, but have to consider that I might be too tired to drive myself home after hanging out, so I might as well just not participate with folks. I feel even more isolated, disabled, and often handicapped by my job and other environments. I look fwd to the day I can move out of NY, marry my fiance and NOT have to work a regular demanding job to make my living. I know that time is coming, but it is a struggle in the meantime. Work is a struggle. Daily chores, driving, cooking, folding laundry, walking, doing stairs are all struggles. IF I get my period or a cold, my symptoms amplify times 1000! Whatever is the cause of my symptoms, it sucks, and I wish I had answers. I miss my former life... it wasn't perfect but it felt much better then this.

How do you guys find the strength? How have you been able to get your diagnoses, get treatment? Is there any brainstorming/feedback/support you guys can lend? I feel like I'm just spinning my wheels. The news about the sleep apnea, plus no movement on getting a diagnosis or treatment has me feeling pretty upset. I don't even want to share with my fiance because I feel like I'm just going to burden him more emotionally. I am an optimist at heart and know I will find the strength to keep carrying on. I have been resilient thru far worse, but this is tough.

Thank you for ANY member who listened/read thru my long discussion entry. I appreciate your eyes/ears/thoughts/comfort/etc. This group has provided such support & education since I joined, and with what I'm up against it still seems to be the only place I can turn to that "gets it" and helps (aside from my fiance). Thanks for listening. Like I was saying, any input on any aspect of all this will be appreciated. God Bless.

Posted on 10/11/12, 07:05 pm
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Reply #11 - 10/12/12  8:35pm
" Hi Aimee,
I had some stomach issues with the pyridostigmine.When I first started taking it I made sure that I ate something with it.Never had an issue with vomiting but my dr. told me to try metamucil for the diarrhea. I thought he was crazy but it works for me. He said twice a day and it comes in capsule form if you don't like to drink it. I really feel for you because it does suck not knowing what feeling "normal" is any more. "
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Reply #12 - 10/12/12  10:25pm
" Thank you guys... I appreciate all this support and feedback. =) It feels good to know that I'm not alone in the medical drama and fighting to figure out what's wrong, get a diagnosis, etc while suffering. Not that I want anyone else to be suffering, and I don't like the whole misery loves company idea. BUT it gives me hope to know others have faced what I'm facing and found their way towards a diagnosis and treatment. Hope you all are feeling well, and enjoying the start of your weekend. Thanks! *Aimee* "

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