Had a Dr. Tell me the "She was confused as to why i was in pain because mg isn't usually associate with pain." As i know that this is true i also know that i have mg and that i am in pain! i am some days moving body parts that esstentail just don't want to move. i am very bothered by her comment because its was almost as if she was questioning me about it and her i am in tears...completely weak can't even pic up my head can't breath and she is telling me that she doesn't understand because "it is normallly associated with this disease" just like to hear some of others thoughts. and maybe if i am just not explain it to her right. I kept saying its like ive worked them to much today, like i over did it, normally i know my limits and when i start to feel weak i stop. Well i was past that i went from weak to weak and pain.....

any thoughts?

Kim, Here is what I put in your other post.

Pain is not a PRIMARY symptom of MG but it is a SECONDARY symptom. When muscles get weak, they can cramp and spasm, just like they do in any athlete. In people with MG, they just do it a lot sooner. DUH!!! I've had my entire trunk muscles go into spasm, which is a huge warning sign that your breathing muscles are about to tank. That was right before my myasthenic crisis.

It's "funny" how some doctors don't use logic but instead only go by what they have read - like that one page on MG in their medical books - and by their "algorithms." Maybe if they stopped to think about it, they might have an "ah ha" moment.

Annie

haha thanks annie! that is the def the way to explain it. I think i was so upset yesteday and her just being so by the book was just making me even more and not feeling well i just couldn't get the words out. i think i will def have to call her on monday and retalk thanks so much for the adivse!

it is part. A secondary. My husband has small fiber neuropathy with his so u might wanna be tested. A reg. EMG will not show it

Although Annie answered your question, I wanted to say that I experience the same thing. Generally I don't experience pain but my muscles do easily get cramps from overwork (or normal use if I don't rest often) which rarely happened to me before I got MG. It can take up to a week of rest for my sore muscles to stop hurting, but once I am rested the pain goes away.

Pain from using weak muscles is absolutely a SECONDARY symptom of MG.

I want to piggy back on this for a moment. For the last 3 months I have been getting muscle spasms in my belly directly above my bladder, and if I climb a set of stairs my calves look as if there is an army of ants moving around underneath the skin... It looks really weird. In addition my hands and arms cramp very easily, and this can be quite painful. I had read about muscle fasciculation but I don't know if this is the MG or due to Mestinon any ideas? As always, Thanks

Hi, I was curious, does you Neuro/doctor have many MG patients? I've found that an MG specialist, or a doctor with many MG patients, usually are well aware of the pains/aching of muscles in MG patients.
One thing you can do is, print out information off the internet, and then the next time you see your doctor, you can show him/her that you found others, (and an article, or two, ) who are experiencing pain.
You can say something in a non threatening kind of voice like, "hey, remember when I told you I've been getting pain, well, it was bothering me so much, that I looked it up to see if others with MG ever have it, and now I don't feel like it's just me, cause look what I found".....etc.... Something along those lines.
Most doctors just want to help you, and will accept the information.
This is one area, I have to say, that I was very relieved that my doctor knows. He has many MG patients, so that really helps.
Annie, the "ants crawling underneath, or even ontop of your legs", can be nerve damage. I have bi-lateral nerve damange down my legs, and that's exactly how it feels on one leg. I also have it where I once had shingles. There isn't anything that can really be done for it, except maybe botox, but I wouldn't recommend it. Especially during summer months, I'm constantly looking down at my leg making sure nothing is there. It's a horrible feeling.
best of wishes
Lizzie

lizzie- thats exactly what ive been doing, i don't think the whole office of neuro has much experience because it seems like every symptom i have is like up for debate it is my mg. yet on here i find so many that are going through the exact same thing...so ive been printing away.

Hi, Lizzie. I reread the post and I'm not sure what you are referring to about the "ants crawling underneath or even on top of your legs" comment. Maybe it's cause I'm dizzy right now and can't read well. I don't have that symptom. I still have leftover parasthesias in my ankles/feet due to my B12 deficiency not being treated soon enough or well enough but it just feels like buzzing and vibrating. I'm so sorry you are having this happening. When I had my B12 deficiency, I wanted to rip my feet off. Isn't there any relief from it, like with drugs (lidocaine patches)? I'm sorry you have so much going on. I know you are really good at handling it and have a great attitude but it can be so hard some days. Take care.

Annie

Oh, sorry, if I got your post mixed up with someone elses. Thought it was you who said it. Fyi, if you ever have the feeling that ants are crawling, it can be nerve damage.
I can't re read now, have to go to appointment.
i could have sworn that what it said. Oye...

and dear newbie, continue to print, and start searching for a good MG doc, or NMS (neuromuscular specialist) You need one soon.
Gotta go for now
Best of wishes.
love Lizzie
Sorry it was Aw3s, Annie.