Widespread muscle pain and weakness? UPDATE post 23

[torinsmom]

She has not had any vision problems per se, but she did say one of her eyes feels like it is not all the way open(it looks all the way open and she can see fine out of it)

And yes, it seems like the muscle weakness gets worse as the day goes on. And it gets worse with activity. She was fine all day Monday, felt bad earlier on Tuesday, even earlier on Wednesday and then yesterday, she barely got to school.

I did find out she is not on cholesterol drugs--she cannot take them because they did give her muscle pain.

I don't know if I would be as patient as she is being. I would have been at the ER yesterday morning, if I felt so weak I couldn't make it home.

 

[booger73]

Hmmm.. eye feels weak.. muscles feels weak.
I'm not her doctor, but she should remention myasthenia gravis.. and make sure they check for it (easy.. acetylcholine receptor ab).. given that she has one auto-immune disease (type 1 dm), she certainly can have more.

Read here:

http://en.wikipedia.org/wiki/Myasthenia_gravis

keep us updated

 

[torinsmom]

Update: My friend finally got to see her neurologist and she does have myasthenia gravis, in addition to carpal tunnel in both wrists. She is really upset, as he told her that working around kids could be very dangerous for her. He said she could have a "crisis" where she could stop breathing if she gets sick. She is my assistant teacher, and does not want to leave her job. She is going to have an MRI and some more tests and see a neurologist that is an expert on MG.

 

[FormrCastMbr]

I am glad they found out what was causing her the problems. My sister has MG and can do anything so I am not sure why your friends doctor said it is dangerous (maybe different age groups are affected differently). My sister had her thymus gland removed about 20 years ago and takes a pill and goes for check up yearly...I hope your friend starts feeling better soon!

 

[booger73]

Glad they figured it out...
(Glad I'm not as dumb as I thought I might be either

Eh.. I wouldn't worry too much about the teaching/being around kids just yet until she really knows how she is doing/if she's getting better...

 

[torinsmom]

I cannot find anything online about it being dangerous for people with MG to work with kids. I guess my friend will find out more when she meets with the real specialist and has further tests. She is hoping that they will find her thymus gland is a problem and remove it, and maybe that will make things better. At least our principal has eased her fears about losing her job. He told her to take whatever time she needs to figure things out and then if she needs a leave of absence, they can go from there.

 

[CharliNye]

Sounds more muscle/muscle junction than neurological... especially if it's BOTH arms and legs.. but you never know.. MS usually isn't painful like the PP mentionedshe's diabetic.. i would hope that someone would be smart enough to stop any cholesterol medicine(statin) that she might be on since that's a well known side effect if she's on one

thyroid, possible, but usually pretty checked early.. is it more proximal (closer) than distal (further away) weakness - i.e. thighs, instead of lower calves - think: rising from a chair

usually can snag a couple of muscle tests easily (CPK, etc) to make sure that's not too crazy

Rash ? polymyositis and dermatomyositis can hurt and cause weakness - she's also at risk since she has DM1 and it's an auto-immune phenomenon of course
Fibromyalgia.. maybe but it's more trigger points, not all muscles

hard to say without more info

As someone who has MS for nearly 20 yrs, that is one hundred percent INCORRECT!!

And if you said that to the thousands on MS World the largest MS board out there people would throw things at you. MS pain is extremely common and most dr's are just finally acknowledging it. For years MS patients were tossed aside stating they didn't have pain, but because it really is a nerve disorder and the dr's couldn't really experience it themselves, and the fact that about 80% of diagnosed experience it-it has to be looked at now as a legitimate concern.

MS can in fact cause much pain/aching throughout the joints. When I'm fatigued or stressed, aside from my fine motor and vision becoming compromised my body hurts. And even in most every normal day I will get aching in my legs or my arms. Even without any exertion whatsoever.

MS is a multifaceted disease and you can never underestimate what it will cause, do to you, or wear down in your system otherwise.

Out of curiousity, since you made such a blanket statement like that, do you have MS? Because I know so many people who have it(it's amazing how when you have it you end up knowing so many others who do as well) and pain is something that everyone experiences at some point or day after another. I have a friend whose mother is practically incapacitated by it with her MS.

 

[torinsmom]

I would think anything involving nerves would hurt. Nerve pain is the worst! That is why I hate going to the dentist to get a filling. I can't imagine that kind of pain on a regular basis!

 

[muppetmom]

I have had Myasthenia for close to 14 years, I think. As autoimmune diseases go, it is usually not a bad one to have. As to the working with kids, if your friend has to use an immune suppression drug, then she will become immune suppressed. But, if she doesn't it shouldn't be a problem. In that case, being around a lot of people or kids could be an issue....all those germs and such. And yes, she could have a crisis, but it is not that common with good medical care. The first line drug, mestinon may be all she needs. It was all I needed for the first 6 years. Then, it became worse and I needed the immune supressant and steroids. Finally, they removed the thymus. It looked like the thymus was not involved, so they opted not to do it until things were getting worse. I expected immediately to feel better....but actually it took me nearly 3 years to recover. My MG is now in remission mostly. I am off all medication and am doing well.
One thing I would recommend that is often not thought of, is to get a handicapped placard for her car. She doesn't need to do any extra walking right now until her MG is under control.
I wish your friend lots of love and prayers! Let me know if you have any more questions.
Muppetmom

 

[torinsmom]

I have had Myasthenia for close to 14 years, I think. As autoimmune diseases go, it is usually not a bad one to have. As to the working with kids, if your friend has to use an immune suppression drug, then she will become immune suppressed. But, if she doesn't it shouldn't be a problem. In that case, being around a lot of people or kids could be an issue....all those germs and such. And yes, she could have a crisis, but it is not that common with good medical care. The first line drug, mestinon may be all she needs. It was all I needed for the first 6 years. Then, it became worse and I needed the immune supressant and steroids. Finally, they removed the thymus. It looked like the thymus was not involved, so they opted not to do it until things were getting worse. I expected immediately to feel better....but actually it took me nearly 3 years to recover. My MG is now in remission mostly. I am off all medication and am doing well.
One thing I would recommend that is often not thought of, is to get a handicapped placard for her car. She doesn't need to do any extra walking right now until her MG is under control.
I wish your friend lots of love and prayers! Let me know if you have any more questions.
Muppetmom

Thank you for your story! I think it will help her to know someone else has gone through this and lived a pretty normal life.

Is that first line drug Mestonin a steroid? I know she can't take steroids. And you were saying that if she doesn't have to take immune suppressants, it would not be harmful to work around kids? We tend to have a very healthy class. We squirt the kids with hand sanitizer as they enter the room, wipe the tables with clorox wipes twice a day and encourage handwashing all day long. I think we had the lowest absence rate in the school last year.

I hope she will get some answers in the next few weeks.

 

[booger73]

As someone who has MS for nearly 20 yrs, that is one hundred percent INCORRECT!!

Out of curiousity, since you made such a blanket statement like that, do you have MS? Because I know so many people who have it(it's amazing how when you have it you end up knowing so many others who do as well) and pain is something that everyone experiences at some point or day after another. I have a friend whose mother is practically incapacitated by it with her MS.

I wrote.. "MS usually isn't painful like the PP mentioned"

Look at the keywords

"usually isn't" - that means sometimes is.. sometimes isn't.. some people have, some people don't. that is not a blanket statement that all people have it or don't unless your definition of blanket statement is different than mine

"painful like" - that means the description of pain may or may not be the same as what the person describes.. the previous poster was describing possible muscle aches and cramps as we were trying to figure out what the OP had stated. I know MS pain has many different forms, including both 'joints feeling bad', or 'neuropathic nerve like pain with numbness, tingling, shooting, whatever'. Painful like means.. sometimes is.. sometimes isn't. Trying to differentiate between joint pain (rheumatoid was mentioned), neuropathic pain (say diabetes-like) is what we were doing.. I was saying, OP's friend, in this case, did not have joint pain like rheumatoid, and was not describing neuropathic pain (which means it could or could not be MS..) The post right above mine.. (from a patient with MS) also said the possibility of the same thing...

As I think about it, if I had written, "MS usually isn't painful, like the PP mentioned" (note, the comma).. then, I could see how you might be mad at me or think I was crazy.. but, I didn't.. so, I don't know what to tell you.

And no, I don't have MS.. but i don't appreciate trying to read into my post more than is there either.

 

[muppetmom]

I don't believe Mestinon is a steroid. But, she needs a good neurologist that is very familiar with MG. He will be able to help her with some of these decisions. When I get a cold (or the flu), I tended to have it settle in my chest more often than before the MG. But, I bounce back pretty quickly with a round of antibiotics. My primary Dr. will see me very quickly whenever I am not feeling well. I would suggest that she work hard on getting plenty of rest, early to bed, and cutting out on as much stress as she can. I found the handicapped placard helped keep me from getting tired out walking from the car to the errands. I dropped out a lot of the volunteer work I was doing and just kept the stuff that I cared the most about. And, on bad days when she feels the worst, she just needs to tell her family how she feels. They can make dinner, order pizza, fold the laundry, cuddle with her, until she feels better. Naps are great if she can get one ever now and then. It was hard for me to say that I needed help, and I probably should have done it more, but it really helped when I did.

 

[torinsmom]

I don't believe Mestinon is a steroid. But, she needs a good neurologist that is very familiar with MG. He will be able to help her with some of these decisions. When I get a cold (or the flu), I tended to have it settle in my chest more often than before the MG. But, I bounce back pretty quickly with a round of antibiotics. My primary Dr. will see me very quickly whenever I am not feeling well. I would suggest that she work hard on getting plenty of rest, early to bed, and cutting out on as much stress as she can. I found the handicapped placard helped keep me from getting tired out walking from the car to the errands. I dropped out a lot of the volunteer work I was doing and just kept the stuff that I cared the most about. And, on bad days when she feels the worst, she just needs to tell her family how she feels. They can make dinner, order pizza, fold the laundry, cuddle with her, until she feels better. Naps are great if she can get one ever now and then. It was hard for me to say that I needed help, and I probably should have done it more, but it really helped when I did.

She is supposed to be seeing a neurologist that specializes in MG next. I hope she is able to return to work. I know she needs to work, and the kids and I really love her. I will be willing to step in whenever she is not feeling as strong and let her sit and the kids come to her to have work checked. Her kids are older(youngest is 13 and the other two are in college) so at least she doesn't have little ones to take care of.

Marsha