hi everyone
not sure yet if i have mg or not.the neuro is sending for testing. it all started with what i thought was my 3rd bout with bells palsey. i still have drooping eyelid on my right side. i have been really tired and extremely weak legs aching and arms ache so bad i have to stop blow drying my hair half way thru.i am 45 years old.mri showed areas of high signal. is that commo0n with mg? anyway i dont know anything about mg so i plan on reading all you post and learning......
sally

Hi Sally, and welcome to NeuroTalk. I'm sorry that I have no knowledge of MG, but I saw this was your first post and I wanted to say Hi!

I hope that some-one comes along soon with more information than I do, but in the meantime.....welcome!

Do have a look around the site and join in any where you feel comfortable.

Hi Sally and welcome to NeuroTalk!

You've posted in the correct forum for your questions so I imagine someone will be along shortly who can assist you.

In the meantime.....I just wanted to welcome you to the site and let you know we're glad you're here!

Hi Sally! First, let me say "howdy" and "welcome" to neurotalk! You are going to LOVE everyone on this site! I know that it has really helped me through some dark times. Everyone here is so friendly and welcoming.....

I was recently diagnosed with MG - by the time I was diagnosed though it had been waaaaaaaaaaay to late and I had to go into the ICU for a while. Granted it may sound scary, but it truly saved my life! I DO know what you mean about not being able to dry your hair. That used to drive me crazy!I truly thought I was losing my mind, cuz' everyday things were now impossible and I couldn't figure out why............it was a very scary time

I don't know what "high signal" means, but my MRI's were clear to the best of knowledge..........

Hang in there and let us know how you are feeling and what your neuro says!

Take care!

Erin

Sally,

Here is the list I gave to my neuro. You may want to write everything down so you won't forget it!

1. Extreme fatigue
2. Eye pain - double vision, eyes will not focus, drift off
3. Impaired speech - sound deaf or drunk
4. Problems swallowing - food gets stuck and comes back up or goes down the wrong way and causes wheezing
5. Hands stiffen up and won't work
6. Really weak - getting worse
7. Problems chewing
8. Coordination problems - my son calls me his "wobbly" mom
9. Weight loss (25 lbs.) due to swallowing
10. Cannot write
11. Cannot drive

Mestinon really helped me, but it was not enough! I had to get on steroids before I was able to eat and drink again!

Hang in there!
Erin

Hi Sally

welcome!!

Not sure what you mean by MRI showed areas of high signal, is this to do with your thymus??


When do you go for testing?? let us know, its a great place for support and to get your questions answered no matter what they are!

take care, and try not to stress too much, as this will make your MG worse, if it is MG
(easier said than done I know, I still stress about the littlest things)

redtail

thank you so much for you replies and welcolmes!
my nuero has had me scheduled for lots of test. she suspects mg, family doc suspects ms. i have been this week to ent test, eeg test, bloodwork (the place where i went said they dont test for musk ab i would to go hosp ital for that). i have an mri, mri w contrast, mra and spect scan.also mri of spine due to neck pain. i have ptosis and i am extremely weak, mostly in my legs. i dont have trouble swallowing or weakness in hands. my arms do get very weak. ia am sooo tired . today all i did was go to the grocery store for like 3 things and now my legs hurt so bad and i am so tired.yes this condition (if i have it is very fightening). i sympathize with all of you. i dont know what is going on with me but i hope they find the answer soon. i need to feel like myself again. is brain fog a part of thnis because i really feel like i cant concentrate?
thanks again everyone you all seem so kind
sally

Hello Sally and welcomet to NeuroTalk. Please take a look around and join in anywhere. Wer'e all just "friends" here and I'm glad you found us.

i just sent a really long reply but i doont know what happened to it so i hope i am not replying twice. anyway i wanted to say thank you to all of you who replied and sent welcomes. i have been going for different test all week long. ent. eeg, qst, bloodwork (the place where i went didnt do the musk ab they said i would need to go to hospital for that) i have had mri, mri w contrasr, mra, and mri of spine for neck pain. my neuro suspects mg, my pcp suspects ms. i dont know what i have but i know i just continue to get weaker and weaker. i do not have swallowing problems or finger weakness. i do have extreme leg weakness and arm weakness, ptosis and occasional blurred vision.i also have slight brathing difficulty. i sympathize with all of you. you all seem very kind.
thanks again
sallyann

So you do have ptosis? Well, I'm not a Dr., but that is kind of a "tell tale" sign of MG, as well as the weakness............

This disease CAN be controlled! If you read up on MG, it is awful, but MS and other diseases can be much worse..........In fact, my hubby's friend (who is an ENT) said that if I had to have an autoimmune disease, then MG is the one to have. You may only have to take Mestinon. Even if you have to take steroids, you'll feel SO much better that you probably won't mind! I know they have been a God send for me!

They call MG the "snowflake" disease cuz' everyone has different symptoms, etc,.

Do you have kids? Do you have a support group? I know that this site is truly amazing and that you will make many new friends!

Memory CAN be affected by MG. I know that my memery isn't as sharp as it once was, but have no real complaints so long as I am on my meds.

I work part time and have a son and hubby who need me to be well and for the most part I am! Just remember to try and take it easy! Don't push yourself when you are tired - just take to your bed. You'll feel much better after that!

Take care
Erin