Just recently diagnosed. I've been miss diagnosed for probably 2 or more years. First symptoms were fatigue, major fatigue, palpitations, shortness of breath, and now that I look back I have always had some muscle weakness. I just figured the muscle weakness was due to getting older. GP sent me for holter testing and echo, test showed strong heart and normal echo. Palpitations probably caused by shortness of breath, ofcourse it must be asthma, and was put on an inhaler. Needless to say it didn't help. I'm very stubborn, not a good patient, went back to GP because I couldn't breath, probably a year later, she sent be for CT of lungs, normal. Now I'm beginning to think its all in my head. But guess what, I now presented with ptosis of left eye. No double vision though, just blurry when tired. This was just a couple of months ago, and 3 weeks ago I ended up in ER. I couldn't fill my lungs with air. What a horrible experience. I was then sent to a neurologist. Blood work and EMG normal, but because of my symptoms they did diagnose me with MG. I was put on Mestinon. Works great for about 4 hours. I am so confused, and scared that I will end up in ER again because I can't breath. Mestinon has definetly helped with my muscle strength, but the breathing can still get laboured when fatigued. Will I get worse?

Hi kpearl,

welcome to the fourm!!

It must be very scary for you not being able to breath properly.
As for your question "will I get worse?" its hard to tell. Us myasthenics are all so different as to how we progress, get better etc. Has your neurologist suggested any other medication? when do you see him/her again?

I know getting stressed out only adds to our symptoms, and saying "dont stress" doesn't help, but try to learn to manage it, it does help, its taken me a while!!!! You also have to try to know how much you can do before you are so tired/fatigued your symptoms get worse, which can be really hard if you have a family, job, just life in general!!

Please feel free to ask as many questions as you want, no matter how small they seem. All of us have been through alot, and if we can help you we would be only to happy to be able to.
you take care of yourself
redtail

Thanks,
like I said, I'm not a very good patient. I find that I do push myself because I refuse to be considered different, I have only told a couple of my close friends that I have this. I don't want people to know, and I'm afraid that I will get myself into a mess.

Yes I know exactley what you are talking about. I'm sick and tired of being sick and tired. So much so that the other day, I went out into my tiny garden spead out some soil improver, blood and bone and promptley started to dig it into the sand, after about 10 minutes of full on digging raking etc my body just gave up, I staggered inside onto the lounge shaking and gasping for breath!! I'd had enough of not being able to just get out there and do what I want to!!!! I still find it so very frustrating even after 6years. I've now talked to myself sternly and said, little by little, as I dont want to end up in hospital or have my prednisolone increased!! So little by little over the last 10 days my garden has been planted with lots of herbs vegies and seeds, cant wait to start eating them.

Everyone who knows me knows I have mg, and they all react differently. Some tend to overcompensate, and try to wrap me in cottonwool(very frustrating), my really good friends just treat me like normal, and know I will say when I can't go out or dont have energy to do something. its a hard call, but you will find a way.

hope I've helped some and not just rambled on and on
redtail

Redtail, I appreciate talking to somebody with a sympathetic ear. I find that I don't talk about this with my husband or family, I want them to see the strong, active woman that they all have known for many years, which brings me to this question, why now? I'm 44 years old. I've been doing alot of research and have noticed that it affects most women in their early adulthood. I also have to admit that after reading this forum, I should consider myself lucky, because there are many people much worse off then me. If it wasn't for my breathing problems I'm sure I would still be carrying on thinking I just have arthritis, or, yes, I am getting older. Again, thank you for this forum, I don't feel I have to suffer in silence.

I know what you mean, I talk to my family about some things, but some things I hold back, cos if I told them everything, they would worry. Thats why its so good to come here and talk, we all know what each person is going through.

I agree with the why now, why me. I had just turned 30 had a great job, and was looking to doing all sorts of things, wow was I in for a surprise!!

Remember that even though someone may have different problems to you, you have to deal with the problems you have, and to you at that moment in time they are very real and you have to cope with them. I still sometimes try to think my symptoms are "all in my head" and if I ignore them they might magically dissapear, then I take my 10 or so morning tablets, and that brings me back to earth

Hope talking helps, and if you feel like you want to send me a PM, I'd be happy to talk
take care
redtail

Hi Kpearl,
Why me is a question that perturbs many of us.
Here are some factors which are reported to trigger MG:
-pregnancy or delivery
-surgery (because of anesthesia and antibiotics)
-cancer
-intense stress
-intense effort
In my case, intense effort + intense stress were probably the cause of my MG.
Think about what happened in your life in the period of 1 or 2 months before the first symptoms appeared…?
Maurice.

Hi Kpearl,
I agree with Maurice - I underwent anesthesia to have my wisdom teeth removed and had a crisis as a result of the anesthetic. After that my symptoms began to emerge really quickly. I had always suffered from double vision so I had discounted that symptom. I also quit smoking around the same time and I've heard some controversial arguements that nicotine may bind to the acetylcholine receptors - I have NO idea if this is accurate, but in my case the 2 did coincide.

I too have felt the "why me" sentiment - especially as a young woman. I was diagnosed in my early 20s and while I've been really lucky and able to live a fairly normal life I still at my lowest moments resent the fact that I can't do so many of the things I would like to do. I used to jog, mountain climb, and dance all night. Now I really have to think about what I'm going to do. It's hard not to complain about things, but groups like this are great to open up in! Everyone understands because they are experiencing the same types of things.

Take care of yourself!
~Kathy

Hello and welcome! You found a great site! I know that it has really helped me in my darkest hour.

You know, this darn disease affects everyone differently, so you never know. I felt like crap for years before I was diagnosed, but it also took me not being able to breathe in order to truly admit that I had a problem. That was the scariest time of my life. Granted, it took a long time to finally get to that point (in fact, my face was frozen in December - frozen) ...........

I was scared all the time, but talked to my neuro and he assured me that the breathing problems (in my case) would not hit like an ashtma attack. In fact, he said that I would feel weak, tired and all of my other symptoms would appear before I would have problems breathing again.........I took great comfort in that!

Are you OK? How are you feeling?

Hang in there!

ERin

Thanks everyone for you understanding, and yes it is great that this site exists.
I have a new question,
I'm currently taking Mestinon 60mg 3-4 a day, unless I'm experiencing difficulty breathing (this is what I ended up in ER with, very scary not being able to catch your breath). If the breathing is laboured I'll increase the Mestinon. Normally it has been working well for me, although when I do increase dosage I find that my facial muscles develop a twitch, but subsides after 30 minutes or so. Is this normal? Also while I have your attention, I find that the lasting effects of this medication ranges 3-5 hours, depending on how I exert myself, will it always be like this?, or will I become immune to the medication, or will I eventually take less? I guess this goes back to my original question, will it get worse?