Hi SoftTalker, welcome to the group, I'm new too, and looking for a diagnosis. I think that a number of my symptoms, but not all, may be related to MG. That is slurred speech, balance and coorindation issues and difficulties walking. My head drops when I get tired and I'm now experiencing problems chewing and swallowing. I find things start off alright but the muscles get tired quickly. I fall over often because of this.
I have seen three neurologists and three cardiologists, had mobile ecg and bp monitors, echocardiogram, lumbar puncture, brain/spine MRI, VEP and a full blood work up. Only thing in my blood was low calcium levels, which I believe is linked to MG? I recently had an extremely adverse reaction to talking cinnarizine, a calcium channel blocker, as well as aspirin, which has led me to suspect MG. I have a negavite acetycholine but I understand this isn't a definitive test for MG. My symptoms were triggered by a virus. At the moment it is getting worse by the day.
I'm not sure how to approach my GP about following up on this. I know presenting to a GP and/or neuro with an idea of what you have is a very bad idea. But I have lived like this for three years and its not going away, despite everything. I can't work, I can't travel alone, I can't drive, I'm dependent on other people...My GP thinks negative acetycholine means no MG. How do I tackle this? Is it possible I can have MG and carotid sinus syncope? Is not MG in part autonomic dysfunction, including control of blood pressure?
Sorry for all the questions, I so want to get to the bottom of this after all this time...

If you can't work and can't function, how do you tackle your GP? Fire him. Get somebody else. If you can't communicate with him and he is not helping you, find somebody who can.

Hi Stellatum (Abby),

Thanks for the welcome.

Basically, the chair with neck support that I use most of the time - is my recliner (think Lazy Boy). Sometimes I add a pillow behind my neck to provide additional support - when needed.

When not at home, it seems I almost am always seeking out places to sit which will ensure neck support (and support other parts of my body) - if necessary. However, my neck seems to be one of my weakest spots - with my MG.

When I was working (eventually went on SSDI) - one of my biggest challenges was trying to find a chair and accomodating work station - that supported my unpredictable torso - back, neck and arms, - vision problems, etc. This was after MG (ocular) became generalized. Workplace tried to accomodate - very difficult and stressful situation - for all involved.

I worked in an office setting - on computer 80% of the time - and I never would have guessed in a million years how a "desk job" could have presented such challenging work situation.

I never realized how many muscles are used for "every day life" - until MG came along.

Wish I had a better answer for you Abby.

Thanks. I can't seem to figure out how to do neck support either. I work from home on my computer (part-time), and I often work from a slumped position, with the back of my head resting on the top of the chair, and my feet on a foot stool, and the mouse on a little table the height of the handle of my chair, on which I rest my arm. It looks ridiculous but works well. Hard to imagine working that way in public, though.

Abby

Would anyone dare to consider something like this?
http://shanesneckbrace.com/
I say "dare" because there doesn't seem to be any medical research behind this design. I don't know what a trained occupational therapist would say. I would worry that it would put some sort of strain on other muscles, or mess up the alignment of my neck. Still...

Abby

LOL Abby,

You must be me - looking into the mirror - in my front room.

Are you on your lap-top computer?

Do you sometimes not get out of your jammies and bathrobe?

Hey - you must be my alter-ego!

SoftTalker

This ought to be a thread in it´s own right, SoftTalker!

I had about zero understanding of which muscles were called what and did what jobs before I ever had myasthenic weakness. I had even forgotten the name´deltoid´until I suddenly found out that I had problems using them! Funny how once you get the problems you just know without actually needing to look anything up…....the exact muscles you are using for writing.....exactly how many muscles you are using to give a round of applause.......exactly which muscles are used, or even perhaps which are not being used whilst swallowing or trying to avoid choking. Haven´t quite figured out those eye muscles yet – but I´m just a beginner there!

Anacrusis

PS....
The example that actually bothered me the most was just how involved a simple action like holding my sons hand was when he was just a little boy. With the unpredictable movements children make – tugging, hanging, pulling (they then you) – the few minutes of handholding would cause a complete myasthenic crash for those particular muscles. And it sure was heartbreaking not to be able to hold your child´s hand like they need you to when they´re between 2 and 5 years old.....

Hi Abby

Just looked at this neck brace. Have tried both - soft and hard neck braces - supplied through RX's.

Was not able to adjust to either type - in hindsight - probably *due in part* to the reasons you mentioned.

MG'ers....
We are complicated creatures - so different - yet so alike!

Guess I am not a risk taker. I shall pass on Shane's idea.

SoftTalker

Yeah. In the early days, when I was still trying to get a diagnosis, every time I went to a neurologist he'd test my neck strength by putting his hand on my forehead and having me push back. It would take me a weak to recover.

Why didn't I just tell them, "I don't want to do that test, because it gives me neck strain and pain for a week afterwards?" I dunno. I certainly would advise others to say that! I think it was because I was so desperate for a diagnosis, and so afraid that I'd be dismissed as a "merely" psychological case, that I just did whatever the doctors said.

My current neurologist isn't perfect. It's hard to get him to move on things. But I am so very grateful that he takes me seriously, and that he takes me at my word when I describe symptoms that he has never witnessed, that it would take a lot to make me give him up. I've heard so many heart-breaking stories here of doctors who simply don't believe their patients, or refuse to acknowledge symptoms that are obvious. My muscle weakness has never shown up on most doctors' tests, because they don't test long enough. Only one neuro--the one who diagnosed me--made me sustain the push long enough that the muscles gave out.

Abby