Well my neuro appt last week went very well. I told him of my suspecting MG. He did an exam that included repetive muscle strength testing- I was amazed how weak my muscles were esp. my legs. He told me of all the testing that could be done to confirm a dx-but that a trial of mestinon would be just as difinitive. I really love my neuro-he spent alot of time with me and his main concern was my "leaky gut" which predisposes me to my autoimmune disorders--Celiac-Sjorgren's-MG. A supplemental diet of nutrients-vits that are to repair this has been started.( I have alot of gut issues since radiation tx for cervical ca 2003). So I was surprised how subtle my reaction to 30mg x 4 of mestinon was! I kept testing my muscles-stairs etc to see if I could tell, remember I'm still unsure of dx of MG. Before you know it I'm doing dishes, laundry making dinner AFTER a trip down to Sacramento-which always wipes me out! I've worked 1 1/2 days of hard yard work outside, which left me near tears- muscle aches, incredible jaw eye pain, weakness-I could not believe how one could feel so incredibe to terrrible within hours--I'm just now getting back to normal-whatever that is!

Yep, no doubt about it, MG stinks! I don't remember who said it, but it was something like "Wonder-woman one day, blunder-woman the next" - well put!

I too overdo when I feel good, which MAY have contributed to my back compression fracture - I was moving a sofa of all things on a day I felt great!

It is really, really ez to overdo it when you feel great, but then be prepared for a few really rough days...........simply put, my neuro tells me to do 80% of what I think I can do - that's it! Easier said than done!

Hang in there! It does get better! Just TRY and take it somewhat ez until you level off......you'll get there!

Big, big hugs!
Erin

I guess I'm "Miss Contrary" today. Sorry.

A trial of Mestinon is NOT considered definitive in the diagnosis of MG. Did anyone even do the MG antibody tests or the MuSk Antibody tests? Most neurologists consider an EMG, whether it's an RNS, EMG or SFEMG to be the gold standard.

Mestinon, in small doses, can actually make people who don't have MG feel better. It can also temporarily make people's muscles with a few other diseases feel better.

Does this neuro have any experience with MG? I don't mean to be offensive but what if you change neuros at some point and another neuro doubts your diagnosis because it was based on a clinical exam only? I've been through too much and seen to much to not at least give you this caution.

I hope you feel better/less weak, since that's one of the goals if you have MG. The other goal is to stop or slow down the autoimmune process. What if you are offered Prednisone or Imuran or Cellcept and you don't have truly definitive test results?

Please don't be angry. I'm just being honest, given my experiences and knowledge.

Annie

I hate to say it, but I agree with Annie. Typically it takes 2 of 3 positives to dx MG - a positive reaction to Tensilon (Super Mestinon, but very short acting - I suppose they could see if the Mestinon helps in lieu of Tensilon since I hear they're not really using it anymore?)
the EMG or RNS indicating MG
and the blood tests for the antibodies.

I would also want at least the blood tests done to document and solidify the dx. If they are negative it doesn't preclude MG (I'm anitbody negative), but then the EMG, RNS or SFEMG should be done. You need more than just the exam and Mestinon trial.
Not to mention that if MG is diagnosed, there should be a CT scan done on the thymus gland. Thymoma's are fairly common with MG and need to be addressed if there.

I'm glad you like your neuro, and I'm sure you're sick of testing with all you've been through, but I too am concerned that this dx would be considered tenative by others, and not ordering the CT scan is down right scary.

All those cautions aside, you have to be very careful. Mestinon is not a cure - there isn't one. You can overdo on Mestinon and still put yourself into a crises if this is indeed MG. You need to slow down - Erin's doctor told her 80% of what she thinks she can do - I say 50% and slowly build in slow increments until you find a safe limit.

Please be careful, take your time and consider or discuss what Annie and I have cautioned.

Hugs to you!

Becky

I agree with you all-- I believe this is a positive step towards a dx but is not definitive. I am negative to the blood test Achr(sp). I am going to visit my sis for a month and have a follow-up with rhuemy and nuero upon my return--then I believe we will move forward with tests etc., til then I will continue to take mestinon. I'm also concerned that I take plaquenil and metroprolol which are contraindicated with mg. Does this mean they are not as effective or inert or exacerbate the mg? I also was taken magnesium supplements because I heard they can make your mg symptoms worse. When you have flares of mg what are your symptoms--mine were severe jaw ache-neck pain body aches eye pain severe weakness --before I only would have eye pain. I have felt very fortunate during this last year I never have pain. Thank you all for responding--I appreciate all advice! I am so ignorant to mg and trying my best to be informed..... Thanks so much!

When my MG flares, the big thing is weakness - not pain. I think sometimes before the muscles give up they are straining so there is some of that just before, but really the big thing is this EXTREME weakness. A coffee cup feels like it weighs 100 lbs. My eyes and facial muscles are usually the last to get involved with me, but I'm a strange case I hear. Mine is generalized and tends to hit either my upper back and neck, or my legs first. The rest just follows if I don't stop and rest in time - domino style.

Magnesium is a definite no-no with MG. I am on metoprolol as well, but a VERY low dose. My neuro was fine with that and I've not noticed any problems that I can link to it.

You may want to go on the vitamins and supplements forum and see what info you can find there about what supplements may be warranted due to the drugs you're on. Make sure to talk to your doc about ANY thing you may want to take, though. I found out the hard way that because MG is relatively rare there aren't clinical trials run on MGer's for drugs before they are approved.

Your flare symptoms almost sound like you could have a viral infection (body aches and eye pain) that may be aggravating your condition. How long have you been in this flare?

Becky

Becky,
The coffee cup example is sooooooo true. I once before treatment when to pick up my coffee cup, and it felt like led, I wasn't expecting it, and when I went to pick it up, coffee went everywhere. And many other times after that.
Sometimes if I'm washing a window, and I'm washing in a clock wise manner, my arms, start to get heavy, and I can't hold them up and have to switch. Almost like your out of shape, but not.
I wonder how many MG'ers spill there coffee for the same reason.
Love Lizzie

Becky & Lizzie, No kidding! There are days when I go to pick something up like three or more times and can't do it. It's really annoying. Or trying to write a check; handwriting is something so routine but it all of a sudden is almost impossible.

Becky's Mom (do you have another name?), Those drugs don't become inert, they just may make MG worse. Some people with MG can handle taking them. Just be aware of how they make you feel.

Too much magnesium can make MG much worse. Most people get enough magnesium in their diet. Vitamin D and calcium are more important supplements to take!

MGers don't usually have pain, at least not as a primary symptom. Secondary pain from muscles cramping or spasming due to being too weak is how we experience pain. If you have body aches, etc., you should figure out what else might be going on. Drug reaction or an infection or another disease.

It sounds like you have a good head on your shoulders so you should be just fine! It's a huge learning curve. Just keep reading. And get those tests done. They aren't "fun" or anything but they are very useful.

Good luck!

Annie

Back to the coffee cup thing. After I was dx'd (for reals) and had my thymectomy, started on the meds, etc. I went to pick up a three hole punch at work and about threw it through the ceiling! It was so light and I had always thought it was so heavy I wasn't expecting that. Just shows how the MG kind of sneaks up on you without you even realizing it until it gets so severe you can't ignore it anymore!

Becky