[BARBARA356]

Does anyone have mid back pain with MG? I also have a hard time turning my head, it is stiff. It seems I am out of breath alot. I just got diagnosed last Month and go back in March. Does this mean I have generalized? How can they tell?

[erinhermes]

Hello Barbara! I too have back pain - the docs don't know what to do b/c they say the roids should relieve any muscle/joint pain, but it doesn't seem to be the case. With the MuSK MG (and someone please correct me on this one if I make a fool of myself) the problems are mainly ABOVE the neck - chewing, swallowing, etc........unless you are very, very weak........

Are you really weak right now? How do you feel in general? Are you OK?

Erin

Originally Posted by BARBARA356

Does anyone have mid back pain with MG? I also have a hard time turning my head, it is stiff. It seems I am out of breath alot. I just got diagnosed last Month and go back in March. Does this mean I have generalized? How can they tell?

[BARBARA356]

Originally Posted by erinhermes

Hello Barbara! I too have back pain - the docs don't know what to do b/c they say the roids should relieve any muscle/joint pain, but it doesn't seem to be the case. With the MuSK MG (and someone please correct me on this one if I make a fool of myself) the problems are mainly ABOVE the neck - chewing, swallowing, etc........unless you are very, very weak........

Are you really weak right now? How do you feel in general? Are you OK?

Erin

Hi ERIN, I seem to be getting weaker in my arms. What is MUsk MG?
Does your back hurt in the center?

[neutro]

Hi Barbara,
I was dx'ed with generalized MG 18 months ago, not the MusK type, it started with a diffused generalized weakness which, at that time I barely noticed, then symptoms begun pilling up each week: jaw muscle weakness, swallowing difficulties with liquids, drooping eye-lids, double vision, chewing problems, swallowing problem with solids, neck stiffness and finally arm and shoulder weakness but legs stayed fine…!
I am now mostly out of it with a mild weakness problem in the legs which appeared when the arm weakness disappeared…!
Maurice.

[MissyGirl]

Barbara,

MuSK MG is a subtype of MG that is fairly "new" on the scene. Testing has just been out in the last several years. If you test negative for ACHR antibodies (seronegative), then your doctor will often run this test. A good percentage of those seronegatives will test positive for the MuSK antibodies.

As someone mentioned, the bulbar/ocular muscles get hit particularly hard with MuSK MG, and it is much more difficult to control. The risk of respiratory problems are also higher. However, it DOES cause generalized weakness, and the aches and pains from muscle strain are just as common in MuSK patients as "regular" MG patients.

Missy (who has MuSK MG)

[erinhermes]

Hey Barbara! Yes, yes and yes! Right in the center! A lot! No idea why! None whatsoever! I've had xrays and scans, but they can't seem to find the "problem".........MG just stinks! Plain and simple!

How are you feeling today? Are you OK?

Erin

Originally Posted by BARBARA356

Hi ERIN, I seem to be getting weaker in my arms. What is MUsk MG?
Does your back hurt in the center?

[ras1256]

Originally Posted by erinhermes

Hey Barbara! Yes, yes and yes! Right in the center! A lot! No idea why! None whatsoever! I've had xrays and scans, but they can't seem to find the "problem".........MG just stinks! Plain and simple!

How are you feeling today? Are you OK?

Erin

This is so interesting for me. I was originally diagnosed by one neuro in 1996 and had extreme general weakness - legs & arms mostly - then my neuro pulled the diagnosis back because of RNS he ran (which I think he had problems with). Then had a crisis in 2004 and was re-diagnosed MG, for sure this third neuro said. Had the thymectomy and fought through until thymectomy got me to remission. Since, my diagnosis has been questioned due to muscle spasms/cramps and pain in the back between the shoulder blades. I've been told that no sensation goes with MG, but so many of you report the same sensations. That's why I decided to find a chat - so I could get info from the experienced vs. book learned! I'm currently in a new flare, with a new neuro due to insurance issues and he is trying to confirm with short term round of steroid to be followed with plasma if he is satisfied with my response. Would be very interested to hear how many of you have heard that you don't "present" in the typical MG way (my eyes, breathing and swallowing are usually the last to get weak enough to cause problems).

[AnnieB3]

Barbara, There's so much to learn right after an MG diagnosis! Your muscles can get so weak that it is hard to do anything with your body. I would still double check with your primary doc or neuro about not being able to turn your neck, if that symptom is there all the time and not only when neck weakness occurs.

Becky, When muscles get weak, they can cramp up or spasm. That's pretty painful! Pain is not a primary symptom of MG but it sure is a secondary one. Just like marathon runners get cramps in their muscles. People with MG just have that happen much sooner! I have had to have P.T. sometimes when my back has gotten so bad that it spasms when I am standing or sitting; sometimes while lying down. Be careful when that happens. When the chest wall muscles get that weak, then your breathing can get worse too.

Annie