Muscle ache question for MGers
 

About 6 months or more ago I started carrying a cane because I would get the "rubber leg" thing when my leg would just give out suddenly. About a month ago I started to notice the thigh muscle on the outside of my right leg gets tight feeling and achey by the end of the day, almost a "pulled muscle" feeling ache, when I'm really tired and have been doing a lot. Is this the MG, or possibly something else?
I've had MG since the 1970's, and take only Mestinon for it, 1 Timespan at night, and 1 60 mg every 3 to 4 hours through the day.
Hugs, Lois

Muscle Aches
 

Lois I have not had to use a cane but I do have muscle aches/tiredness/fatigue. My right calf muscle sometimes aches and I put a heat pad on it. Also, after sitting an hour or two my diaphragm area aches where I can barely sit. Again I lay down and put a heat pad on that area. Sometimes when walking in a store my legs get tired and that weak feeling. I usually try and find a place to sit down. I really don't like doing a lot of shopping. My husband helps out and does all the grocery shopping and a lot of other things. The only meds I take are Mestinon, every 3 to 4 hours also.

I don't know if I helped, other than to say you are not alone. Life can be so frustrating at times!

Cindy

Thanks, Cindy, that did help. On the OBT, I would have just researched the question, since I know we did several threads on muscle aches, but with the MG brain fog, I just couldn't really remember what the info was. I THOUGHT it was the MG, but nice to have it confirmed that someone else has the same problems.
Hugs, and welcome. So glad you found this site!!! :)

Lois you're welcome. I am glad I helped. As you know, you can always go to your doctor when things just don't seem right. I, in fact, am going shortly just for a check-up. Do you go to your Neurologist every year for a check-up? Nothing has really changed for me but just thought I would go, especially now that I am on Social Security Disability.

Cindy

Thanks, Cindy! Wish I had a neuro to go to. I am currently between neuro's. My GP keeps me in Mestinon. She is on the lookout for an MG specialist that isn't too far away, but feels that unless and until we find one, I'm better off not going to one of our local neuro's who know really next to nothing about MG. The last 2 she sent me to tried to throw me back into diagnostic limbo, although I was diagnosed by an MG specialist over 30 years ago. It's as if every neuro has to make the diagnosis for himself, and if you aren't classical MG, you just don't fit their mold. I'm sero-negative, and was told by the last neuro that I couldn't have MG because "only purely occular myasthenics are sero-negative". So you see what I'm up against. My GP feels it's better to wait and try to find a specialist if I need to see a neuro, than to keep "shopping" for one who will accept the diagnosis or who knows enough about MG to realize it's a very individualized disease. Meanwhile, she keeps trying to educate herself on MG (she has two patients with MG), and is always grateful for any info I can glean for her and print off from my research online. Unfortunately, as a GP, the only medication she can give me is MEstinon, which is fine by me, since the neuro before the last 2 she sent me to did agree with the MG diagnosis, gave me Dexamethasone, which provoked a myasthenic crisis. I've not been the same since.
Ah, well, we survive as best we can.
Hugs,

Lois,
I know Tennessee and Cleveland aren't exactly close, but maybe a trip to the CLeveland Clinic would be good. I think that they will confer with your primary doctor once you have been seen there. I went to Mayo and the doctor there talks with my local neurologist and they go from there. Otherwise there's a Muscular Dystrophy Clinic at Baptist Hospital in Nashville, maybe your doctor can refer you there?
Gabe

Thanks for the suggestion, Gabe! Fortunately, the MG is more or less behaving itself. But I will definitely keep your suggestion in mind, and perhaps mention it to my GP as a possibility.
Hugs,

Lois, I kind of understand what you are talking about. But what is sero-negative?

Sero-negative means that I don't have the anti AchR antibodies. Many seroneg MGers have another kind of antibody, the anti MuSK antibodies, but I've never been tested for those. And there are some MGers that are MuSK negative also. Testing positive for the anti-AchR antibodies is almost always a postive diagnosis for MG. It's when you are seroneg, as 20% or so of us are, that the diagnosis gets a bit trickier. That's when you really need a neuro who is an MG specialist. I have heard of MGers who are negative for all of the tests available, but still diagnosed with MG because of having the symptoms, and responding postitively to Mestinon. But finding a neuro who is expert enough in MG to make such a diagnosis is like finding a needle in a haystack.
If you want more info, google anti AchR antibodies, and see what you come up with.

Lois thanks. I tested negative to all tests my neuro gave me. I don't know if I had the anti MuSK antibodies. I guess I am sero-negative? But, I did have the single fiber test and that showed I had Myasthenia Gravis. I will be seeing my Neurologist next week and will ask her these things. Did you have that single fiber test? It hurt.

Cindy