Dealing with MG
 

Hi,

Am new to this forum, and am glad I found it as where i'm from, there isn't much info on MG and there aren't any groups or associations whom I can turn to for answers.

I'm being tested for Mg currently, and am still awaiting the test results on my blood and it takes 10 weeks!! My neuro isn't exactly helpful, and there's just so many questions going on in my mind, as its test after test but yet he has not told me anything about what this is. I've donｅ the EMG　but its negative.

I've been experiencing weakness in my hands and legs for close to a year now, and since Feb, the facial weakness is starting to affect me. Vision is blurred and I'm having problems reading, eyes cant seem to follow long paragraphs well. So please pardon me for this upsizee of words. Find myself having problems pronouncing words properly, think its difficulty controlling my lips somehow，so find myself speaking really slow. Can't really open my mouth big enough to stuff certain foods in too. Are these symptoms of MG as well? If so, how do you all cope with the slurring? What tests did you have to do before they got you diagnosed properly？ :confused:

Would really appreciate any reply.

Hi Connie,

Yes, the problems with your speech and vision are symptoms of MG. I found the difficulty with speaking was more due to my tongue than lips, it was partially paralyzed by the MG and would not work the way it is supposed to.

It is very manageable with mestinon. My thymectomy cleared up a lot of my symptoms and the remaining symptoms are being handled with medication.

I suggest you write down all of your questions and bring them on paper to your neuro. You deserve answers about what is going on with you and how (s)he intends to treat you.

Best of luck and welcome to the forum

Cheers,

Brian.

Hi ConnieS!
 

Hi Connie! Welcome to Neurotalk! It is a GREAT site for information and tons of really caring, wonderful people to help you along your way!:D

It sounds like you need a new neuro. Obviously the one you have right now isn't suited for his/her job. I think a lot of people will agree that when dealing with something as serious as MG, a caring neuro who actually LISTENS is the one you want to deal with!

I am still a newbie with this - I was dx'ed a yr ago and had my thymus removed as well. I am one of the "lucky" ones who has a GREAT neuro, but I am the exception to the rule.......sigh........

Are you on any meds? Mestinon? Anything? If you are really weak, you NEED meds in order to regain your strength............

You sound like you have all of the "classic" MG symptoms. If you are weak, please REST! MG isn't something to fool around with and you cannot "push" through it..........it will just make you weaker.

Once you ARE dx'ed and on meds, you will feel so much better. It does get better! :D

Hang in there!
Erin:D

Forgot something......
 

Hi Erin and Brennan,

Thank you so much for the prompt replies!

Yes, I would love to change a new neuro as well, but am not sure where to go to as well. Have been reading up a lot on MG with the help of the Internet and am kind of wondering is it MG or is it not!

I'm currently not on any meds, as my neuro isn't keen on giving a diagnosis yet. All he says is we'll monitor, we'll monitor... He has done some strength tests by asking me to pull and push his hands away, but nothing on the eyes so far. My lids don't exactly droop, just find it extremely dry, and feels like theres a layer on top and frds just comment that i look tired. Did you have to go to an optometrist to do the eye test?

Yes, am trying to find a balance between going on and stopping to rest. When I first started having the symptoms, would struggle on and on then suddenly find myself needing 3-4 days of rest before I can move properly, though at a snail's pace. :cool:

Sometimes I feel that I'm imagining all the symptoms as there has been no diagnosis, thought I was going crazy.:D After all, havent really heard about anything that fluctuates like this. My family thought it was psychological too and that contributed to the "I'm going crazy thought.." :eek:

Just to check, on jaw weakness, how do u deal with it? Have read that its hard to close the jaw, but mine's more like tough to open wide, which seems to be rarely found in MG.

Mmmmm, yeah it's all in your head. It's all in all of our heads. We're all mad as hatters :D:eek::rolleyes:

My neuro wanted to monitor after my thymectomy rather than put me on any medication. It was my oncologist who encouraged me to push for mestinon at a low dose to see what that does. It helped me a lot, I wouldn't have made it through radiation therapy without it.

The eye thing with the dryness is common in MG too; you're just having problems with a different set of muscles and your eye lid is not blinking completely.

While I'm not a doctor; I'd suggest asking for a prescription for mestinon and trying it to see if it helps.

Best of luck

Brian.

Hi Connie, welcome to this forum!
I also think that the symptoms you describe fit well with MG. I also had some problem in keeping my lower jaw up, probably because of jaw muscle weakness.
When Erin was talking about eye test, I think she head in mind the test some neuro perform with one finger moving up and down, then left to right, one foot away from your face to check whether you have good coordination of both your eye muscles, am I correct, Erin?
I described in one previous post:
http://neurotalk.psychcentral.com/sh...825#post406825
(post 13) a serie of simple tests run regularly by my neuro to quantify the degree of my MG, you may try this to check by yourself.
I presently have a score of 100 but I went down to 32 about 20 months ago, so as somebody recently asks, yes, there could be some light at the end of the tunnel…
Maurice.

Hi Connie, and welcome to the forum!

Not being able to open your mouth is somewhat different - as you have read it's usually a problem of not being able to close it.

As far as finding a new neuro in your area, where do you live? There is a site where you can do a search for free. You can check by location and specialtly, then get ratings on where the doc was educated, the hospital they work from, etc. Go to vitals.com to check on this.

I found my newest neuro by just doing a google search for neurology + Denver CO, then kind of visited websites to see if they specialize in neuromuscular. I got lucky and found one that lists MG as one of her specialties. That's unusual to find though.

You do have to investigate what sub specialty a neuro has. Some really keep up with vascular neurology (migraines and such), some with head injury, etc. You'll want one who's main interest lie in the neuromuscular areas. If they don't list this, ask about it in a phone call. Whether this is MG or not, it certainly sounds neuromuscluar.

Good luck with the testing, and ask your current neuro for copies of all the reports! This is essential always in "neuro world" but especially if you are thinking of changing docs. I still have records from way back that keep coming in to play ( I have a secondary, as yet undiagnosed, condition).

Also, ask your doc to discuss the tests - what they were ruling out or looking for and why. He should be willing to do this - if not, ask him why he doesn't feel you have the right to know??

Best of luck to you, and please keep posting. I always get nervous when we don't hear from someone that posted once to tell us they're having problems then never post again. Even if they start heading another direction on you, that information can be of importance to the rest of us here.

Once we've heard from you, you're part of the "family" so keep in touch, ok?

Big Hugs to you!

Hi, Connie. Sorry I haven't chimed in yet - I've in the middle of an MG flare. That's when your symptoms get worse.

Yes, your symptoms all sound like MG. MG is basically skeletal muscle weakness that is worse upon exertion or repetitive activity. Eating is definitely repetitive! Just take smaller bites of food. I have found that during a family get together, I am always the last one at the table because I need to eat so much more slowly.

TEN WEEKS to get an antibody test back? Where'd he send it - to the Space Shuttle? It should only take a week to ten days. And I hope he did the Acetylcholine Receptor panel AND the MuSk antibody test.

You may not even realize that your eyelids are drooping. You could go see a neuro-ophthalmologist for an evaluation. They have these tools they can use to see if you have fatigable eyelid muscles. What they do is have you look at objects and see if they are "aligned" vertically or horizontally, etc. If your eyes are both aligned the same, they should see (for example) two horizontal lines on the same plane. I saw them as one up and one down!

There's the Tensilon test too, which not a lot of people do anymore. It's where they inject a fast-acting version of Mestinon and see if ptosis gets better.

Does the blurry vision get better when you close one eye? That's "technically" double vision if it does. If it's due to MG or a similar problem, it will get better when you close one eye.

Until you see this guy again or get another neuro, stay out of the heat. It makes MG worse. Go to www.myasthenia.org and read more. Ditto on what these guys have said about neuros and tests, etc. You need someone you can talk "with" and not one who talks "at" you.

I hope you get some answers soon.

Annie

Annie, great info you just posted !