1st post
 

I just tested positive for acetlycholine receptor antibodies after developing a moderate case of ptosis in my eyelid. I think this means I have MG. I'll see a neurologist next Monday and am trying to learn whatever I can until then. I'm trying to figure out how my life will unfold with this condition.

Does anyone have anything helpful to say about my outlook going forward? Some with MG seem to really have it tough but others seem to be doing OK.

I know, it's an unknowable question, but I've still got things to do and I am very afraid. This just wasn't a part of the plan.

I'm not really sure what to ask but for many, you know why I'm asking.

We know how you feel. Some people get worse. Some people get better. Some people stay the same. Nobody seems to be able to tell me which I will be, so I am guessing that you will have the same trouble.

I have ups and downs. I still can walk and talk and work. I do have a serious limitation on the extreme amount of activity that I can do.

I hope that you will get all better.

gr8ful, You have found yourself to the right place. There are lots of helpful members willing to share their experience to help you through the uncertainty.

I myself still do not have a definitive diagnosis yet. My antibodies are negative so far, I have an SFEMG later this month. I started with ptsosis of the right eye, followed by severe fatigue, stumbling tripping, dropping things, changes in my speach and choking with eating and drinking. I also am still walking (fell a few times), talking and working. I am out of work this week from a fall the week before. I have just started Mestinon and the neuro opthamologist just raised the dosage. Hopefully I will feel better.

I am mangaing but I am limited in my physical activity. I have made a lot of adjustments and accommodations along the way from when and what I eat, to the temperature of my shower, to very limited physical activity and lots and lots of sleep and naps.

This forum has educated me by following the threads and members sharing their experience in their posts. Try not to get too over-whelmed. I know how stressful the diagnosis process can be and stress just makes this illness worse. Try the sticky at the top of the forum for some general info.

Welcome to the group but sorry you have to be here,
kathie

Hi there,

It must be scary for you.
Though anti achr ís highly specific, it is possible to be "false positive" meaning you have the antibodies but not the disease. This happens for example with some LEMS patients or older people (70+). But in combination with your ptosis it's a good change you have it.

However, this doesn't mean the end or you changing your plans!
It just varies a whole lot. The standard textbook you can expect:
Some expansion of muscle weakness, like your facial muscles, arms, hips. It wil be progressive for the next 3 - 7 years, then will stay the same. Medicine can help to get a life with not so many problems or even an earlier remission. (Meaning you are a patient, but with no symptoms).

However, it just varies. To be honoust, I've never seen such a textbook patient. Some with MG will be in a wheelchair, need support like respiratory support, take 60 pills a day wit loads of side effects. But these are extremes. Others take 3 pills a day, and can still work, go out, sport, run, do whatever they fancy. I know someone with MG who works 80 (!) hours a week, runs marathons and is very active.

It's also possible it will stay with ptosis (there is such thing as OMG, just occular).

We can't tell you how much problems you're going to get. There is a good chance that, maybe with the help of some pills, you will have very little symptoms. If there's one thing I can tell you, it's that being stressy or anxious about it is no good. And that if you want to say something or ask questions, you can go to this forum. (Oh wait, that's two things :) )

Anyway, good luck with your neurologist. :hug:

All of us on this board know just how you feel. The term one day at a time
is very true with MG. The best advise that I can give is don't get ahead of yourself. Hopefully you will find a good neurologist. Avoid stress until you know more about your condition.

good luck

gr8ful, Let us know how you do after the neurologist appointment. My thoughts are with you through this difficult time,
kathie

Gr8ful
 

I will ad my 2 cents to this. I was diagnosed about 7 or 8 mos ago, after having syptoms for appx 3 years. We probably all wondered the same as you.I have read several places, that after about 3 or 4 years, your symptoms are about as bad as they usually get. Howver, as I have read on this group, that is not always the case. I was doing just great on 3 Mestinon a day, until I again developed the old droppy eye. So was allowed to increase dose to 4 times a day, still some problems. but tolerable, (using a little clear surgical tape to help hold it up if needed). So I agree, a day to day thing, you won't know for sure where its going. Again, I will say, could be worse, it could have been something terminal. Dont be scared, they have lots of medicine for this, and can live with it.
FREDH

Thanks to all for the kind words and info. I spent quite a bit of time reading this forum. There sure is a wide range of symptoms for MG. I'm trying to figure out where I might fit in but that doesn't seem possible....and yet I try. It's not helping my stress level but I suppose accepting I have a serious disease is a process I have to go through in my own way. Another new 'adventure'.

I haven't told anyone besides my wife about my MG. Co-workers saw my ptosis but I've shrugged it off. Does anyone have any advise on this? Work, friends, family, once you tell someone, you can't ever un-tell them.

I have not told anyone at work. I get strange look sometimes when my eye do weird things, like get stuck half way open or wander in their own direction, or trip all the time. I do not work in a place that is nice and accepting. My boss expect very high performance and if they thought that I could not give it my all, or thought I had a serious disease that might leave me disabled, it would show in my performance appraisals and raises.

I still have a teenage daughter to get through high school and college, so I keep it a secret at work. I have not told my daughter or the rest of my family yet. I am seronegative and I do not feel I can tell them until I have a definitive diagnosis yet.

Once I do get a definite diagnosis (SFEMG scheduled for the end of the month) I plan on getting a medical alert bracelet, so I will have to prepare a response by then.

Sorry I can not be of more guidance. I struggle with it myself. I think I will just tell them I have an auto-immune neuromuscular disease and leave it at that. If and when the time comes that it severely affect my attendance at work or I need to reduce work hours etc.. then I will tell more. Otherwise, I hope to retire without anyone at work ever knowing.

kathie

I have not told my boss that I have MG either. It is really not any of her business as long as I am able to do my job. Even though it is illegal for them to discriminate, I think that it would certainly happen on some level. If I get to the point that I have to have accommodations to continue working, then I will have to have a discussion with my administrators.

I have noticed students staring at my eyes on occasion. I also sometimes lose my voice while lecturing. I just give them a break and try again. I have one coworker that continues to comment on my gait. He asks me why I am limping. It is none of his business, so I just say, "I fell off of too many horses in my life." I don't even notice when my gait is abnormal unless my feet start to catch or drag, so it is really annoying that he tries to point out my problems. I avoid him whenever possible.