I don't think so, MG is more about muscle weakness, not pain. Hopefully, your Doctor can get to the bottom of this - sounds awful. Easy for me to say but, you need to stop worrying and playing the 'what-if' scenario with yourself. That won't help with the MG.

Peter

Worrying and playing the "What-if " scenario? In the last 2 months I went from fairly healthy 42 year old who could walk without pain to a 42 year old who I can only compare to my 95 year old crippled grandmother, who is in so much pain, I have to medicate several times a day to have any type of life. The thought of living like this for the rest of my life isn't playing the what if scenario, its a possibility if its related to the MG, and from what some others have said on another group, who didn't dismiss me as easily as you have, it can be related to MG. The muscles support bone structures, and with the heat we have been having here this summer, I have been having such weakness in my body that I have been having food come out of my nose, trouble swallowing, chewing, writing, chopping, things we normally take for granted, and with that, those muscles support that support the joints also become weakened, and the joints can be hypermobile, causing them to become damaged. THIS is just a "scenario", but at least I wasn't blown off like you have done. I live in a place where we have one neurologist, and my family doctor doesn't know much about MG. Infact my neurologist doesn't even seem to know much about MG. So I need to do my research about MG or I might miss something, so if that means doing my research online and bringing it to them for them to decipher, then that's what I will do. But I'm going to worry either way, because I am in so my agony, and the thought of living with this for the rest of my life is scary. My family doctor is away on a 5 week holiday and won't be back for another 3 weeks. I don't see my neuro until October, and I want to have something to show them that maybe "this is this, maybe this is that". I've had xrays, and will get the results when my doc is back. I'm not just going to sit and do nothing. That's the definition of stupid! THAT won't help my MG! I'm sorry I came to this site. All I see are post about teenagers and depression, and all I get is a high and mighty reply that I need to stop worrying about the excruciating pain and stop the "what if" scenarios with myself? What the hell? Thanks for NO help at all Peter!

Sorry, you found me unhelpful (at best). Rather more information this time, not that I'm qualified to talk. I'm not a Doctor or a Nurse and I tend to take people at face value. If things are as you say then you certainly need to see someone sooner rather than later. The issues surrounding your mouth do seem MG related and suggest a lack of medication. Most / many of us ended up in hospital fairly soon after diagnosis, for assessment. Perhaps you should give A&E a try when you next lose control of your mouth and suggest that you are in MG Crisis?

I should probably add the Mestinon does nothing to address the cause of MG. That's the initial role of Prednisone and as you don't take it or from what I see anything to address the cause things could easily get worse. Nothing set in stone here, some people do manage well on Mestinon alone. I don't and it would seem neither do you.

Sorry you are feeling as if the site offers no help at all but it helped me tremendously know when I was in crisis in 2013. I have had MG for 18 years now and I am finally at a place where I can say it’s under control. Find a good Neuro that is well versed in aMG and a doctor who is willing to work closely with him. If u are having food come back thru your nose it could very well be acid reflux. I am currently on 10 mg of prednisone and 60mg of mestinon 3 times a day. Every MG person is different. Having a a Positive attitude will definitely help u get thru the hard days. Also I only have cramps in my foot when my potassium is low. Hope this all helps. Prayers to u

Hi sorryabout your troubles, and for what i have read it is very clear that you only have a solution, ,and since you have no neuro, your doctor, knows nothing about mg, i

YOU SHOULD DIRECT YOURSELF TO THE EMERGENCY AND FORCE THE ISSUE, DO NOT TaKE NO FOR AN ANSWER,

also the onl way you know if it is mg, will be by taken the tensilon test, it is expensive that is one reason why docs,avoid the issue, being controled by insurance co. they control cost and the hell with patients.

forget, family doctors, primaries and others, the need is NEUROS, AND DOING THE FIGHT THINGS.

also, you are not along on this, we all havw to go thru hell, and then at the same time, we are our own doctors, pratitioners, and take hint from eachother in occasions.

dont forget that this has being gone for over 400yrs, and we still hanging in there.

best of luck (fighter)

Sorry if I seemed a bit upset. I just felt as though I were being dismissed and told I was being too "pity me" about this. I don't believe I am in crisis. I am breathing fine. The food comes out through my nose when I try to swallow, not food coming up through my stomach as in reflux, as in instead of rice or fluid going down through my esophagus to my stomach, it's going up and out through my nose. I'm also having a hard time swallowing, but I am managing, and it has got better since it has cooled down in the last two days since I wrote this post

BUT, my main reason for this post was to find out if anyone else experienced bone/joint & nerve pain when they experience muscle weakness. That's all. I have been having excruciating pain in my knees, shoulders, neck and back ever since the extreme heat hit this summer and my muscles became weaker. Again, in the last two days since its cooled off it has become a little better, but the joints are taking their time in getting better.

Has anyone had any experience with this kind of pain?

I have join pain, but am just assuming it is arthritis. I do think the MG makes it worse, because my muscles don't support my back and neck much anymore, which puts a lot more pressure on my spine. I spend a lot of time in my recliner for neck support and to take the pressure off of my lower back. But honestly, arthritis just comes with age. I take Bio Sense Water Away for occasional water puffiness, and Ibuprofen for the joint pain.

At the risk of repeating my earlier comments: MG is not consistent with pain, whereas arthritis certainly is and having had both knees replaced I can vouch for that. The operation is probably the more painful but, at least that's only for a few weeks afterwards. My arthritis was age-related, yours, if that's what it is, might just be rheumatoid arthritis, given that it is yet another autoimmune disease in which the body’s immune system – which normally protects its health by attacking foreign substances like bacteria and viruses – mistakenly attacks the joints.

Food coming out of your nose, indicates an inability to swallow and that would seem to be muscular and potentially a symptom of MG? I still think that you 'LifeOfNigh' are under medicated and judging by the other thread, you seem to understand that to be the case? Prednisone might not be the drug of choice for everyone, for whatever reason, but it is a powerful tool in the MG armoury.

hi,

i am going to be as clear as possible, and answer only about your pains and tribulations,

when i was dicovered with mg, about 3 month lather i felt the same type of pain all over my bones, cramps ect, they felt like they where going to crack at any minutes

because i am 5"7 and of slender skelatine, my neuro send me for a vit. d 2.5 test, couple of month before i had one and was regular 32mgs.

when the test cam back, my level was at 15mgs, whay below standart recomendation, was put on 50.000 units once a week, but unfortunalty i was delclared chronic defficient, and in this last 8 years i am set with 50.000 twcice weekly, and my arting stand only vaiable beetwen 43 and 52mgs,

but i can assure you that my bones are felling like new, the only pain i get is occasionaly at night in bed, and i beleive that this is do to my mattress

with mg, was told by my neuro that i should sleep in a very soft, because as mg. progresses and your tendons, and mertves are surfacing, rubbing when laying down by turning and tossing will cause these anoing states

for the muscle pain, cramps exct, i would advise you that you get yourself a HAND TENSIL MACHINE you can get them a any drug store the cost is $30 to $80.. I use it every day for about 15 minutes and beleive me the releif is there and alowwes me to go thru the day just fine.

i am in bulbar,generailized b severe/extreme. so as you can see every body is stock with some definition. and as i said before,get to the mergency and force the issue,

youe life is yours, and nobody else, so is imerative that you do not stress and demand the access to doctors

best of luck, you are not along (fighter

Thank you so much for all of your replies! I appreciate them all! I'm going to do something about this.

LifeOfNigh Bless your heart i understand 100 percent how you are feeling. And i was told that liquids coming up through your nose is part of MG and its the swallowing muscles being weak i get it also. I also suffer so much with joint pain and nerve pain i have been tested so many times for MS also nothing shows on MRI scans. I really hope you can find doctors to help you get this all figured out i wish i could tell you why we have nerve pain :( or tingling i notice my muscles get very tingling right before i get a small flare of weakness. joint pain and just feeling all over achy i have had positive ANA and went up a few times which really means nothing just that i have inflammation i have also been tested for lupus all come back normal other than the ANA.
keep us posted please if you figure out why you get so much pain.

I agree with the possible vit d, people with autoimmune are usually deficient and one of the symptoms is joint pain. I take both vitd and b12 which helps the nerve pain. I also use frankenscence and myhrr essential oil. It helps with pain and you can get it at the drug store. I’m not a big believer in that type of stuff but it does help. Walking helps too. My son is a nurse and he says even if have you sore joints keep moving.