Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi guys! I've been browsing your boards for a few months now actually. I started when I thought I may have MG.
The very first symptom I had was last April or May (I can't remember which month exactly ugh) when I couldn't swallow anything for that whole month. It made it very hard to take my medications for bipolar and some days I couldn't force them down. It was very hard to eat or drink anything and I dropped about 10 pounds (116 to 106). That went away after I took a rest from exercising for about a week and I didn't think about it again, thought maybe I just needed a rest and it manifested in a weird way. I started exercising again and I noticed that by August it was getting hard to swallow again and I could barely hold my neck up and by the end of the day (around 5 or 6) I just had to go lay down. I had a little arm and leg weakness but nothing terrible. I took another rest from exercising and walking every day but this time it took a month to "recover".
After I felt better I started exercising again in September. One day in October I couldn't even get up from the couch, my legs were extremely weak and I could barely hold up my phone. My neck was so tired I couldn't hold my head up. I haven't been able to exercise again until just now.
I went to a pediatric (I'm 17, 18 in the summer) neurologist in February and they sent me for a CT scan of my thymus and it came back normal and all of the antibodies they tested for came back negative. They ruled out thyroid problems since that runs in my family. The next thing I have to get is the EMG.
I kind of feel like since I'm feeling better they won't find anything wrong and they will think I am being a drama queen. I kind of think nothing is wrong now that I am feeling better. My mom is taking me to a neurologist that specializes in MG at the end of the month and I'm worried that if this EMG comes shows up negative and I'm having no symptoms at the moment everyone will think I'm just crazy! I forgot to mention how sometimes at night I wake up not being able to breathe (it doesn't happen often) and sometimes when I'm in a "flare" it gets hard to breathe.
I guess my real question is will the doctors think I'm a crazy person? This is already a hard disease to diagnose from what I've read of y'alls experiences!
Anyway thanks for reading all of this. Help me please. I'm kind of freaking out here.
The very first symptom I had was last April or May (I can't remember which month exactly ugh) when I couldn't swallow anything for that whole month. It made it very hard to take my medications for bipolar and some days I couldn't force them down. It was very hard to eat or drink anything and I dropped about 10 pounds (116 to 106). That went away after I took a rest from exercising for about a week and I didn't think about it again, thought maybe I just needed a rest and it manifested in a weird way. I started exercising again and I noticed that by August it was getting hard to swallow again and I could barely hold my neck up and by the end of the day (around 5 or 6) I just had to go lay down. I had a little arm and leg weakness but nothing terrible. I took another rest from exercising and walking every day but this time it took a month to "recover".
After I felt better I started exercising again in September. One day in October I couldn't even get up from the couch, my legs were extremely weak and I could barely hold up my phone. My neck was so tired I couldn't hold my head up. I haven't been able to exercise again until just now.
I went to a pediatric (I'm 17, 18 in the summer) neurologist in February and they sent me for a CT scan of my thymus and it came back normal and all of the antibodies they tested for came back negative. They ruled out thyroid problems since that runs in my family. The next thing I have to get is the EMG.
I kind of feel like since I'm feeling better they won't find anything wrong and they will think I am being a drama queen. I kind of think nothing is wrong now that I am feeling better. My mom is taking me to a neurologist that specializes in MG at the end of the month and I'm worried that if this EMG comes shows up negative and I'm having no symptoms at the moment everyone will think I'm just crazy! I forgot to mention how sometimes at night I wake up not being able to breathe (it doesn't happen often) and sometimes when I'm in a "flare" it gets hard to breathe.
I guess my real question is will the doctors think I'm a crazy person? This is already a hard disease to diagnose from what I've read of y'alls experiences!
Anyway thanks for reading all of this. Help me please. I'm kind of freaking out here.
let me just say it is very easy to lump everything into one diagnosis ie "bi-polar". That's what happened to me - I was diagnosed in 1991 with MS and everything after that was "MS related" but it really wasn't. In other words its better to get things checked out then not.
I'm also pretty sure 99% of us wondered if we were "crazy" while going through the long drawn out process of diagnosis. And that feeling is compounded by the doctors and so called "friends' who point out "its no big deal". I even had doctors tell me along the way that this was all in my head. (Funny side note: I remember one in particular who used those exact words "It's all in your head" so when I got the results of my MRI and it showed all the lesions in my brain, I sent him a copy with a note saying, "I see you were right, this is all in my head". Followed by a few choice words I shall not repeat.
Hang it there - its a long road - we're here for you! Mary
Please don't suggest to yourself you are crazy. Erase that from your mind.
Your symptoms are very very real.
Trust me.....you have better things to do than to come up with theses symptoms.
Acknowledge the truth.
Be true to yourself.
Im Annie and I am 17 as well. a lot of my symptoms were and are very similar to yours so I can imagine how scared and confused you must be right now. If you see this doctor who specializes in MG im sure he will not think youre crazy. Most doctors are clueless about MG but those who specialize in it, know MG when they see it. hopefully you will get a diagnosis soon.
this site can be really helpful if you have questions or concerns, I know ivee gotten a lot from this forum.
I will friend you but feel free to message me. im always looking for people my age to talk to about living with MG
Good luck, bri
Annie
Welcome here to the forum! Make a list of your symptoms so you can take it in to the neurologist. Be sure to put down the problems with breathing happening at night and sometimes during flare.
When I first went to see a neurologist I came in with two full pages of symptoms....all real. He never blinked but went to work trying to figure them out. If you go in feeling confident and able to describe what you feel the doctor should take you at your word. My two page list is whittled down to just a handful of symptoms now but every one meant something. Sometimes it takes a long while to figure all out but that does not make them not real.
My daughter has had some symptoms for over 15 years that her doctor has just now figured out. No one doubted her symptoms but sometimes it takes a long time to figure out what is wrong.
I am sure you will get faster results. It is easy to forget important things when in a meeting so just write down a list of things in short form so he/she can go over them and ask you questions.
I hope you find answers soon! I had a breathing disorder and it caused me to stop breathing at night. I had another disorder that caused my airway to cut off that required surgery. It is very good you are noticing things and keeping track. It speaks to you awareness of your own body and no one else knows you as well as you do. Good luck with this and let us know how things go. Marie
Being told: you might be crazy? That's the kind of response that you will see - when someone can't figure things out.
It's also something that many of us have heard - along the way.
Even from people in the medical world.
Please look forward - to the appointment with the MG Neurologist.
Keep in mind: many of us - had to go through several Neurologists, before we found a true MG Specialist.
Also keep in mind: there are many medical conditions that mimic the symptoms of MG.
A well-experienced Neurologist - can help sort this all out.
- Ross
PS: isn't it great - to make a posting on the MG page of Dailystrength? And have a wonderful person like Annie! The same age as you! Giving you some help!