Teresa, are you seeing a regular neuro or a neuro-opthalmologist?

ALL of my neuro docs seem to realize that loss of balance IS an MG problem. When I am having trouble (muscles/weakness), they have me do the "try to walk on toes and walk on heels" thingy. AND, my neuro-opthal guy said that the double vision I am having is messing with my balance, too. Apparently, I have NOT one, but TWO sets of muscles not working properly........so, one eye's view of the world is "tilted" -- making me feel like I have vertigo.

I dunno. I think we need some kind of virtual program to let neuros see what MG is REALLY like!!

BTW, I soooooooo agree!!! MG forums and groups are the best!! To think of having to figure this out on my own???? NO WAY!!!

Every doctor knows that MG patients are prone to falling. Well, isn't losing your balance is exactly the same thing as falling, except you manage to catch yourself before you actually fall? Why isn't that totally obvious? Of course MG can cause balance problems! Balance is achieved by contracting different muscles. If those muscles are weak, balance will be bad.

My first false diagnosis was an inner-ear virus. Boy, was that ever off the mark. As for "those muscles aren't affected by MG": it's this mistake that delayed my diagnosis by about a year.

My doctor says this about exercise: you can't fix MG with exercise. But if you don't exercise at all, you will decondition your muscles, just like anyone who is sedentary. Exercise, if you can tolerate it, won't fix the weakness caused by MG, but it might prevent the weakness caused by deconditioning.

How much exercise an MG patient can tolerate without using up the energy he or she needs just to do things like get to the bathroom--well, that varies wildly from patient to patient.

Abby

Thanks, everyone, for your input. It's taken me some time to think about it all.

Susan, I'm sorry you're feeling lost recently. You'll have to consider everyone in this forum throwing you a lifesaver!!! There aren't many people who understand what it is we go through on a daily basis. I've recently had a kick up in my PTSD and I know you understand what that's like. So that helps.

Abby, I like your analogy of energy to water rationing. You pretty much begin at zero, given that you have SEVEN KIDS! For me, just listening to any politics on TV wears me out. I refuse to be pounded every day with the rhetoric. I insist, however, on using my energy to vote.

You brought up "reasonable expectations" for MG and treatment. There are no easy answers, are there? And everyone has to decide for themselves what risks they are willing to take. Most of these AI diseases are "Catch-22's," except maybe celiac. Though I do really miss gluten sometimes! All I have to do is think about how completely sick I got on it and then the craving goes away. But MG can't be stopped by taking something away. H@!!, it takes away everything to varying degrees.

I like what Jana said about a tightrope but I'm glad it's a figurative one because there's no way I could balance on a literal one!

Jessica, I had to laugh when you said that about your neuros. What percent of the already reduced percent and for what minute of each day? And does each neuro only get 50% of your response? I sometimes think that men have a hard time with telling the whole truth to women because THEY can't handle it! Or is your neuro a woman? Is this a doctor thing? My female primary doctor, after I just had x-rays for a couple joints in pain, said that my x-rays were reassuring and that my bones looked great. Well, I got the report and she failed to mention that I have moderate degenerative joint disease. Why is the truth so damn hard to say? It's not that hard to hear.

Teresa, Well, I don't think your lack of being a doctor means your intelligence isn't dead on! I absolutely agree that bad food, toxins, too much sodium, too much diary and on and on causes our immune systems to go bad. Not that we are to blame! Those things are often the "trigger" that sets our genes off and gives us a disease.

And I love that line . . . "Those muscles aren't affected by MG." She doesn't have MG but her brain muscle is apparently affected by it. What do they learn in school? I know, I always give my doctors a break too. Sometimes you do have to reword things in order for them to get what you're saying and in the context you're saying it. However, she WAS utterly wrong. But if you "correct" some doctors directly, they get so offended. If you act stupid and say, "Aren't all 640 skeletal muscles potentially affected by MG?" they may not even like that. It's great that you are so good at communicating and explaining things, Teresa. I'm often too worn out to do it well.

Jana, I think we should put out a DVD for docs on MG, from a patient's perspective! But when would they have time to watch it?

Exercise is great for everyone. Okay, that's been proven. HOW to do it in MG is a whole other DVD. It's not the same for "normal" people. Why do doctors always turn to a study instead of common sense? I don't need a study to tell me that I need to laugh.

Jana, I'm exacerbated right now but not from my MG. In the past year, I can honestly say that my MG has acted up a handful of times. If I exercised more than what I do, I'll be back in the hospital with doctors who exercise my patience.

Juanitad, I remember when you talked about losing bladder control. I thankfully haven't had it happen a lot but it does happen! I honestly believe that they are so busy memorizing facts and algorithms in med school that they hardly have time to process what all of that truly means in real terms. So when answers do come out, they are the "programmed" ones, like you said.

Rach! How the heck are you? Your doctors are so funny, I forgot to laugh. I love seeing you here and reading your blog. I still wish you could get that cutting edge surgery that helps with gastroparesis. I know I posted a link at some point. And it hardly matters what you call it, the end result of what you have is fatigable muscle weakness. So, as far as I'm concerned, you do belong here. I miss your humor and blunt way of looking at the world.

What's funny is that when I read your posts, I don't read posts of MG patients. I feel a sense of wonder, determination, inspiration, humor, anger, joy, honesty and community. If only all of us could get jobs as "thinkers" instead of "doers." I think someone wealthy should hire someone healthy to put our collective personal stories out there. But, heck, we're doing that right here already.


Annie

Thanks Annie.

I do miss this forum but I feel like a fraud having gone 5 years with and without an MG diagnosis!

MG is still raised by every doctor I see other than neurologists. I still can't look up without getting bilateral ptosis, My ptosis still resolves when I do the ice pack test. I still can't stand on tip toe and then stand on my heels. But I have a negative blood test and negative tensilon tests.

I am now on midodrine for my postural orthostatic tachycardia syndrome - which helps with my ptosis but the only thing that really gets rid of it is mestinon......if only I could tolerate it!

I think that part of my illness will always be a medical mystery!

Rach xx

Rach, It occurs to me that if anyone is going to be labeled with "fraud," it would be your neurologists.

Can you handle any amount of Mestinon? What about Mestinon Syrup? What if you have too much acetylcholine? Have you tried Quinine (tonic water)? Not that I would recommend that, given how bad you are!

Seriously, what's the deal in England? I've heard so many bad medical stories from there. Not that we don't have our share here. And Prince Charles is so fond of his NHS.

Whether you're here or not is your choice. I, for one, completely support you being here. It's clear that you have some type of myasthenic syndrome or MG.

As far as that BS Tensilon test you had . . . didn't they give you Atropine first? I don't think it was a valid test. Kind of like giving sugar before a glucose test or McDonald's before a cholesterol test.

I'd ship you over here if I could. I hate when people don't get good medical care. It really makes me nuts. I'm so sorry you have not been adequately cared for. You deserve better.


Annie