Hi. I used to be on Brain Talk a long time ago. I am now trying this forum out because I could use some support.

I found out in Jun 2006 that I've had fatigable ptosis my entire life. Quite a shock. I had been diagnosed with MG in 2001 but then thought I might have Congenital Myasthenic Syndrome (which has a genetic cause, not an autoimmune one).

I found out about a month ago that one of my MG antibody tests was positive in 2002. It had not been given to me or told to me by the doctor! It was buried in his notes only, which I had not read.

So now I don't know if I have CMS or MG or both (which is possible). It's a long complicated mess of a story that I won't bother you with. I'll probably never be able to have the CMS tests done since only two places in the U.S. do them and let's just say one of them has not been very nice!

I'm having to do more tests again and may have to go off of my Mestinon and Advair at some point, for a LONG period of time, if I want accurate results. I'm not sure it's worth it or even if I can do it.

Anyway, it's all pretty frustrating.

Annie

If I ever give you guys any "advice" or ideas, please understand that I am not a medical professional. I have been through more medical crap than the average person, as has my family, so I am more well-read then most people that's all.

Hi Annie,

sounds like you are going through a tough time at the moment, and I can understand you being frustrated!!

You've come to the right place for support, hope you find what you are looking for here.

Hello Annie! How are you today? It sounds like you've had a heck of a time with MG..........

Hope it gets better soon! If you need to talk, let me know!

Erin

Thank you, Redtail & Erin. I think the hardest part now is not knowing what treatments I can have other than Mestinon. I've maxed that out.

I do have a cup of coffee every day, so that helps. In case you didn't know, caffeine is a cholinesterase inhibitor just like Mestinon is! I found that out last year after I quit having any chocolate and got weaker. It increases both dopamine and acetylcholine. That's one thing the docs don't tell you! And you shouldn't have caffeine (or nightshades because they do the same thing) before an EMG!

I'm just sick of doing testing, you know? Sick of doctoring in general. I can't believe that not one person, like eye doctors, could figure out that I had fatigable ptosis growing up. I guess that lazy eye they "diagnosed" when I was 10 was just ptosis. It's so obvious in my K-12 photos it isn't even funny.

Anyway, I appreciate the support. It's really hard to deal with MG (or CMS) on your own.

Annie

Hey there! I had no idea that chocolate and caffeine were so good for me! I'm done with sodas, but living in the south LIVE off of sweet tea and eat chocolate daily - lol!

I know how tired you are of testing. It is so monotonous and time consuming - the whole "hurry up and wait" thing really got to me as well!

I don't know how many docs I saw, but it was waaaaay too many and I just thought I was crazy.............

I just don't understand why people have to get so sick before getting properly diagnosed........MG is rare, but it's not that rare! We all have most of the same symptoms.......

Hang in there and let me know if there os anything I can do!

Can't wait to hear from you!
Erin

Hi Annie! Sorry to hear about your situation...It seems to be a growing trend with our health care professionals we encounter; they don't know a damn thing, lol. Sometimes I feel like they have a little dart board in their office they toss a dart at for diagnosis....

No kidding Erin! I have two gallons of sweet tea in my fridge right now

I'm very disappointed with the doctors I've encountered. All except my neuro, she has always been honest and been outspoken with me. Otherwise it seems like people don't know what they're doing. I had to see a doc yesterday for a mass I have on my ribcage and on the referral under history he wrote I had MS...This is AFTER I had a lengthy conversation with him about my meds and how my neuro was upset he prescribed me an antibiotic I shouldn't have taken.

People are idiots everywhere. Just sucks to see our group running into the vast majority of them : / They're either idiots or they just don't care. Either way, it's unfortunate because we're having to pay for their incompetence.

I had no I idea about caffeine. I asked if there was anything special I needed to do before my EMG early this month and they told me to just not use any lotions or creams. I even asked if I needed to not eat or drink anything.

So I had my normal cup of coffee that morning! Does this means that my normal EMG could have been different? I am NOT repeating that test because they didn't tell me I couldn't have coffee first.

They did a muscle biopsy though so hopefully it wont matter. Thanks for the info.

Kristie

Yeah. I didn't know about the coffee either. I drink tons of the stuff and have since way back when. Had several cups prior to my last EMG as well, plus my Mestinon. I'm about ready to bite the bullet and head to Mayo in Minnesota - the big kahona for myasthenia diagnosis and treatment, I hear. Not in my insurance, but I stand to lose a lot more $$ if I keep having to leave work (1/2 hr. after I got there today)! Then maybe other docs will respect the diagnosis a little easier.
Becky

Thank you, everyone. It really helps to "talk" to other MGers again.

I know, Erin, MG is not that rare. CMS is but they're supposed to consider that when looking at MG. CMS (some of them, there are over 100 syndromes) is pretty much exactly like MG but has a genetic cause.

Any kind of caffeine will do what Mestinon does. I cannot believe doctors don't know this or don't tell us this! There are tons of articles on it.

Gdbyrd, Doctors can be pretty awful but they can be really great too. I've got some fabulous ones, thank goodness. I don't know why, but neurologists tend to be so arrogant and don't listen well.

Kristie, Who knows how much coffee effects an EMG. I just know that most sources say not to have it about 3 hours before an EMG.

Becky, Mayo is not necessarily the best place to go, especially if you don't have insurance coverage. It is very expensive to go there. Dr. Barohn (Kansas) is supposed to be incredible.

Thanks again. Since I've been doing this doctoring for ten years, I've kind of decided that the most important thing is to keep doctors/doctoring on the back burner and enjoy my life. I just hope I don't have another MG crisis 'cause the poor dears won't know what to do!

Thanks for all the info Annie. Do you have info on Dr. Barohn in Kansas. I could take a motorhome trip out to him I suppose, but as this progresses I suspect they're gonna decide I'm more normal than not.

There use to be a list of Neuro's that specialize in MG on the MGF website, but not anymore. Once I get rediagnosed, I'm still left with the question of who to see to treat me!

You take care and stay out of crises and away from those docs - ya hear!

Becky