Doe anyone have expertise on the nerves that control the neck muscles that hold up
 

our head.
At our last session my neuro says that my neck problems,an inability to hold up my head without a soft neck collar is not his area not mg but spinal as I already had for five years spinal stenosis at L4 and L5 in my lower back.
recent x rays at accident and emergency show spurs etc in the neck.
I have asked my family doctor for a referral to a spinal specialist.
intersted to know like maurice has anybody else had neck problems and what did the neuro say was it mg related or not?

My auntie used to have a lot of neck trouble. She was not dx in her lifetime - only later from photos. Sorry I can't be of much help to you. In the end my auntie used acupuncture to help. She had pain as well as weakness.

I have scoliosis of the spine including neck. Now I am not exercising as much - my back is twisting more. I feel weaker all over so guess this could include neck muscles. I have trouble sitting unless its a recliner. Hope someone else can chip in with more info. I am learning to not believe in Neuros much.

I also have neck problems and when they are weak I usually use my hand to "prop" up my head. My neuro just this month suggested I have xrays of my neck but then said "no, because the ortho may want to do surgery and we don't want to open that door" I have to agree with him. I hope your neck problems improve.

why does he not want to open that door?
 

If it is the correct thing to do in other words it is not muscular which is neuro but is bone which is ortho or spinal.
It has to be established where the problem stems from .
You are not owned by the specialist but should be referred to the proper discipline.:hug:

Patrick, It may be a combination of weak muscles and stenosis. When muscles are weak, the spine is affected since muscles are what hold up the spine (to some degree). They have those velcro travel neck pillows now that are better suited than the collars with no "indents" in them that have been used for decades for neck problems.

I think it may be worth your while to consult with an orthopedic doctor and a neurologist who specializes in stenosis. You have to be VERY careful when dealing with any spine issue, particularly stenosis. Physical therapy may help to some degree but it could make things worse too. Surgery should be the last thing you try - quite dangerous. If surgery goes wrong, there's not a lot that can be done after that and many people are in more pain after surgery than before.

Well, I haven't been much help! Just find a couple new doctors to consult with. I hope you can find relief.

Annie

Patrick,

I also have spine issues. I have some degeneration in my lower spine with stenosis, reverse kyphosis in my upper spine and mild scoliosis. I know that when the MG's flaring, it makes the pain worse because my poor spine (yes, I feel sorry for our bodies! lol) is working extra hard to hold up my body. The doctor told me that there's really nothing I can do about any of it. I know that massage can help with the reverse kyphosis, and I think that exercise is a must when it comes to spinal issues, but with the MG, it's hard.

Btw, prednisone can make the symptoms of spinal problems feel much worse. One of the side-effects is 'lower back pain,' maybe because of the robbery of calcium, but not exactly sure.

Also, apparently upper spine issues can impact breathing. It can decrease lung capacity by up to 30%.

It's hard to know what to do. I agree that surgery is something I'd never consider even if things got really bad later on. I've heard horror stories about it.

I used to work with a guy who did the surfacing for our lenses at the company I worked at, and he'd stand all day long for like 10-hrs. He developed spine issues and started wearing a brace. This helped a lot. Maybe an assistive device like this for your lower back and neck might help in the mean time until you get enough strength do some very light exercise to strenghthen your chest and back if possible- I know it's hard, though (the exercise, I mean).

Nicky