What an excellent thread guys.

I pop in from time to time to see how you are all doing but rarely comment as I feel its your forum and I still don't know if there is an element of MG to my illness or if its just dysautonomia and ehler danlos syndrome.

You guys are all so inspiring and when I first started my journey (over 5 years ago now) it was you that helped me push for answers.

So thank you xx

Rach

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

I fully agree with that.

regarding mestinon. There are other ACE inhibitors such as neostigmine and mytelase. Why not try one of them?

It was not a useless test at all, as it was the first clue to the diagnosis of autoimmune problems.
Many times physicians use supposedly inert substances as "placebo" without realizing that those substances are not inert at all.
Ptosis that responds to atropine is a huge clue to an autonomic problem, even if it is not an official test.

Unfortunately, patients that have complex and "out of the box" medical problems get pretty horrible care everywhere around the globe.

In fact the more I look at it I come to the conclusion that most physicians really want to take care of patients with easy (but not too easy and "boring") to diagnose disease (preferably something they can brilliantly diagnose) which respond well to commonly used treatments, without too many side effects (or at least no ones they will complain too much about).
Patients can have "some" emotional response to their illness, but they better not bother their physicians with it too much. They should mostly make their physicians feel good about themselves, their brilliant diagnostic skills, their compassion and dedication. (And they better not put any of this to a real test).

Placebo=to please= the patient has to please the physician and not as was wrongly thought in the past, the other way around.

sorry I would have replied earlier but I've had a rough few days.

I can handle about 60mg of mestinon in 24hrs. Anymore than that and the side effects are horrific. I scream in agony with the stomach cramps, probably not helped by my bowel adhesions (that are kicking up a stink at the moment).

Mestinon syrup is incredibly difficult to get hold of in the UK. Its on a named patient basis only so its not held by pharmacies and would be a special order from the hospital neurologist. As I don't have a neurologist and hope never to have one again I have more chance of flying to the moon than acquiring it.

For my last tensilon test I was given saline, atropine and then tensilon. As my blood pressure was below 90/60 pulse around 54 - my heart rate shot up to 140bpm and raised my bp when I was given atropine. My eyes opened - ptosis resolved and I felt ok. Then it wore off and I was given tensilon - which did nothing.

From being on different forums and facebook groups I have found there are other ehler danlos sufferers that have ptosis, double vision and nystagmus. They are all symptoms of this condition - its just ashame that none of the Dr's I have come into contact with have ever known this.

Mestinon makes me feel better.....but is it the fact it raises my blood pressure?

Lots of POTS patients also have oxygen saturation issues. Alot of POTS patients also have EDS.

POTS and EDS cause fatigue - but those syndromes don't explain the positive ice pack test or the fact I can't do basic things like stand on tip toe and then stand on my heels.

What has been very interesting for me is that some POTS and EDS patients also have elevated Achr tests - but are told they don't have MG. The positive Achr test being one of the gold standards for diagnosis.....so confusing.

What I am most concerned about is that autoimmune diseases and autonomic nervous system dysfunction seem to run together. How many of you measure your blood pressure regularly? How many of you have low blood pressure? Low BP will cause fatigue. I know a lot of you have been told you have CFS as well as MG- investigated properly you may find its problems with your ANS thats behind those symptoms.

Sorry I have hi jacked this thread a bit. I just think its important you guys are aware of the fact MG not only screws with your neuromuscular junctions but it could also effect your autonomic nervous system as well.

Hugs
Rach x

Rach, thanks so much for posting. First of all, it's really good to hear from you. Sometimes people just disappear, and I wonder what happens to them. I am especially worried about Annie56 (not sure about that number...I think it was 56) who was so very sick and not getting the help she needed, and then just disappeared.

But the information you share is also extremely helpful. I try to tuck it away for the future.

Abby