Hey hon! I've often thought about making a shirt that says "I've had a thymectomy/MG. What's your excuse?" but my hubby thinks that it would offend too many people. LOL!

The last time I was in the hospital a teenager innocently asked me if I was pregnant - needless to say I was mortified! I always had a 22-24 inch waist - now it is 36+ and my face feels like it is HUGE!

Love,
Erin

Hi Erin,

I am glad to hear that steroids work for you, as for me I feel as if I am jumping out of my skin, I toss and turn all night due to the sweats and jitter. I jump at every little sound now, and oh boy my stomach! (not to mention how the mestinon messes with my stomach). I hope to start the stronger stuff soon and taper off the roids. Thanks again for the welcome! This is a pretty cool community


I feel your pain. I still haven't told my family yet let alone people at work/friends.

Hi Aw3sk3r! Welcome to this site...

I'm sorry to hear of your diagnosis, but as all the others have mentioned here, MG is a much better autoimmune disease to have than some others out there. Don't mind me asking, what caused you to start worrying about ALS? The AhCR figures do show positive for MG, which I wished I had. Lol.. I started off with symptoms similar to MG, but later found out that it was because I was too weak (sort of malnourished). I didnt test positive for the AhCR, nor the EMG for MG. After all the nourishment, when the weakness persisted, and spasticity and cramps came in, then was ALS suspected, and subsequently diagnosed.

Pardon me, but I do hope its MG and not ALS for you. I'll type more next time when I hav more energy~! lol..

Thanks Connie,

I stumbled across a statement while looking for info on the AchR test saying that the AchR level was positive in cases of myasthenia but also in some instances of ALS where MG might also be present, and therefor making a true diagnosis difficult. I am a bit worried as my symptoms are progressing even though I take all these meds, it's so frustrating

Stay well!

Hey Awesker,

I've come across those studies too, and they made me worry about ALS as well...I have bulbar MG, and my antibody levels are 2.88, which is kinda low, but I had a thymoma too...But yours are 54 which is really, really high...In ALS, and other neurological diseases where the test can sometimes be 'falsly' positive, I've never seen an antibody level any higher than 1.00 (in the studies I came across) unless the person also has MG, which is unusual...Believe me, I'm pretty sure that you have MG, but I'm just a lay person...Your symptoms are similar to mine...My symptoms have progressed too, and mine is sorta refractory to treatment...But when I have a plasma exchange, the symptoms get 80% better...

Maybe you can ask your doc. for a plasma exchange if your symptoms are getting that bad...This will also put your mind at ease that you have the right diagnosis...

Take care!

From what I understand about MG and ALS:
MG fluctuates -- you are usually stronger in the morning and weaker later in the day -- you may be able to talk one day and not the next -- repeated use of a muscle makes it stop working, rest makes it usable again (for a while, at least).
ALS doesn't fluctuate -- once you lose a muscle, it doesn't come back.

My two cents -- your symptoms are CLASSIC MG. You may not be taking enough Mestinon -- or taking it often enough. Do NOT, however, increase your dosage without your doctor's approval -- overdosage is DANGEROUS!! There are other meds that can help with your stomach issues.

Prednisone can actually make you WORSE in the early stages -- you need to discuss this with your neuro. When you have Bulbar symptoms (talking, swallowing, breathing), you are supposed to be given steroids very, very carefully at first so that you will NOT go into crisis.

When you are stressed (worrying about whether or not you may have ALS), you will make your MG "misbehave" even more. MG does best when you take a "chill". Try to "go with the flow" as much as possible.

Learn from the people in this group -- they are AWESOME -- they KNOW their stuff!!!