[teresakoch]

Hi, all. My name is Teresa, I'm almost 50 years old, married with 4 girls. My problems started a few months ago when I finally looked in the mirror because my eye was watery and blurry, and I thought that the contact lens was stuck or something. When I looked in the mirror, I noticed that my right eyelid was droopy. It was still that way a few days later, so I called my doctor's office, and they referred me to an ocular specialist. I was thinking that I was going to be able to get some plastic surgery that my insurance would partially pay for!.....

Well, I found out that my field of vision was substantially reduced - which probably explained the couple of near-miss incidents I had the previous few months with cars on my right side (never even saw them, even though I looked) - so the plastic surgery was going to be medically approved (woo-hoo!). Then the doctor said that there was one more test that needed to be done to rule out a muscular condition, and that's when this whole journey started. I "passed" the ice-pack test - or should that be "failed" it? Anyway, off to the neurologist I went.

I started reading up on MG, and realized that the tiredness that I had been experiencing in my arms when folding clothes and the general feeling of no energy wasn't due to my advancing age and my obesity ("No, really, honey!"). Now I'm starting to wonder if the pain that I have been feeling from time to time in my chest is something other than "The Big One", especially since it feels more like a "Sternum/Rib Cage" type of pain, rather than the crushing pain that HA patients describe.

Our youngest daughter has Down syndrome, and she was diagnosed with Celiac Disease 2 years ago, and I realized that the skin rashes that I had been experiencing since childhood were the dermatological manifestation of CD (I had negative blood test results for CD, but carry the gene). So I have been on a gluten-free diet for the past 2 years, and will be on that for the rest of my life.

I felt SO good when I started eating GF, it was like a miracle for me. I lost 40 pounds without even trying, and I had more energy than I can remember having since I was a teenager! But a couple of months ago, I started losing energy again, and I gained all of the weight back - the upside is that when I went GF, a lot of the fat converted to muscle (without exercise - hooray!), so I am still a couple of sizes smaller than I was 2 years ago.

So I've had all of my tests, and now I'm in limbo. The blood test was negative, as was the nerve conduction test; my thymus is normal, and I only had one abnormal result on my SJEMG test. The doctor isn't sure if that is a "fluke" result, or if it is an indicator of MG. I just started taking generic Mestonin last week, and I am slowly working up to see if there is any change in my eyelid position.

The neurologist is great and comes highly recommended, and I do feel that I am in good hands with her. She hasn't diagnosed MG yet, as I think she wants to see the results of the Mestonin trial. If this is MG, I think it was caught VERY early, so I am hopeful.

I guess my question is: has anyone else experienced this? If so, how long did it take before you got "worse", and how bad did it get? If it weren't for our youngest daughter, I wouldn't worry, but while she is almost 9 years old, in many ways she is still like a 4-5 year old in that we have to keep a pretty close eye on her around the house (all of our other daughters are pretty much grown - the next oldest one is almost 18). It takes a lot of energy to keep up with her! Fortunately, we have a woman who comes in to help with her on weekday afternoons, so that takes some of the stress off of me.

I worry that I will become a burden to my husband and my kids. I worry that I won't be able to take care of my parents. I really don't want them to worry about me, because my younger sister passed away 18 months ago, and I'm the only other child they have. I wasn't even going to tell them about this, but my dad was here visiting, and he happened to see something on the counter that talked about my neurologist's appointment. So now they're worried that they might lose their only other child. I know that doesn't happen much anymore, but it has been so hard on them.

I've always been the "rock" of my family - and we have some strong members, so that's saying something. I don't want to lose that.....

Thanks in advance!

[Rrae]

WELCOME to NT! Thank you for introducing yourself and sharing .....
I latch right on to 'us' women at 'this' age (fun innit )

My heart goes out to you and I just wanted to say 'hello' and make you feel welcome here.
Everyone here is so very caring. Just ask if you need help finding your way around. There are just so many venues here that will embrace you, so just look thru the main menu and peak in anywhere you feel compelled. You'll find warmth and caring concern around every corner.

Seems like the DAY i turned 40, life turned into one big battle......Been that way ever since.
Part of what you shared (the feeling so run down, etc) immediately made me think of 'Thyroid' ...... that was part of my main culprit..... but I think you said you've had that tested.....

Anyway, it will be nice getting to know you and you'll find much support here.....and no doubt 'we' will be inspired by YOU as well

Glad you're here
Rae

[jana]

WHOA, Teresa -- LOL. First thing, MG is NOT a "death sentence". True enough that we don't always lead "normal" lives like some of the literature says. But, I am a pretty optimistic person. I think that most of us ADAPT to our circumstances. We figure out HOW to manage with "the beast". MG usually isn't painful -- so, I tell people all the time that if I HAD to have "something", MG "ain't" so bad.

Now, you said you were negative on the "bloodtest". Did you ONLY have the AChR test? Did you have the MuSK test, too? I ask BECAUSE your journey will be easier and smoother IF you have positive bloodwork. You can STILL have MG with negative bloodwork -- and honestly it sounds like YOU do -- with the positive SFEMG and the ice-pack test -- but, the docs LIKE to see positive bloodwork. Just being honest, here.

BTW, it is unlikely that Mestinon will do anything to your ptosis (drooping eyelid). For some unknown reason, Mestinon doesn't work very well on ocular symptoms.

Welcome to the group!!!

[teresakoch]

I know that MG isn't a death sentence - it's just that my parents do research on the Internet, too, and of course the respiratory MG crisis is brought up, and they've already lost one child. Mostly I don't want them to worry too much, and I want them to know that I will be able to take care of them when the time comes.

I appreciate the kind words - yeah, middle age is just a barrel of laughs! I will have to say that I have enjoyed the freedom that comes from being able to speak your mind with advanced age - I don't worry much about what people think about me any more. As I like to tell people, I've raised 3 teenaged girls - there is NOTHING that you can do that will scare me now!

I guess now I just worry that every time I have a "symptom", I'm going to attribute it to MG, and every time that I read about a symptom, I'm going to be like all of those 1st-year medical students that you hear about who are sure that they have whatever disease it is that they are studying that week. Lord knows, I don't WANT to have MG, but if that is what I am looking at, I want to know ASAP so that I can go from there.

I mean, after I had the ice-pack test, I started thinking back to the past couple of months when I had been having some vague things going on. Of course, I started correlating them to MG, even though I hadn't seen a neurologist yet. I had noticed a few months before that sometimes my jaw would get tired when I chewed a lot; sometimes my arms felt almost limp, but not really, if you know what I mean; sometimes it was hard getting up the stairs at night; sometimes when I would get out of bed in the middle of the night I would have to stand there for a couple of seconds, just to make sure my legs were "all there". I haven't fallen, and I haven't ever felt numbness, so I guess that's a plus.

And it's hard explaining to my husband how it "feels", because there really isn't any good way to explain it. My muscles don't really FEEL like they aren't working; they aren't wasting away, and it doesn't sound like they will. So they feel strong to him. And I certainly don't LOOK like there is anything wrong with me, so it's hard for the family to "believe" that I am really as tired as I say that I am! And that makes me feel like I am all kinds of lazy, even though I know that I'm not.....

When they asked me how long my eyelid had been drooping, I had to tell them that I honestly didn't know, because for several months as the evening wore on, I always thought that my contact lens was just out of place in that one eye. I never thought to look in the mirror until that one night that I thought that the contact had split. So the eyelid may have been drooping much longer before that; it's just that no one really noticed it. And it's not so bad that people WOULD notice it, unless they were really paying attention (and of course, once you point it out to them, they go, "Oh, yeah! Sure enough...."). Only one person noticed it without us mentioning it, but it doesn't really become noticable until after 8:00 at night, unless I've really been using my eyes a lot.

Anyway, thanks for the help!

[allen L]

jana, really? Im not doubting you but 10 days after I started taking mestinon, my vision problems dissapeared, and have not returned for over a year.(Now Im on Ivig, but the mestinon cured both the double vision and droopy eye, not to mention light sensivity and some sluggishness)
I guess everyone reacts differently.


Teresa, hi!!!!!!!

Work with your neuro, people here know their stuff, you can say anything you want here, nothing is off base(ya know what I mean), Ive discussed stomach issues with mestinon to teeth clicking here. And this board has people that have been there and understand. Better sometimes than talking with family.
Openly discuss your issues if you need to vent.

[jana]

hahahahahahahaha -- yep, Allen, you are the "oddball"!! It is wonderful that the Mesty worked for your ocular -- I've heard of maybe one other case -- but, it is very rare. (Mesty works on every afffected muscle in my body BUT my eye muscles.) Maybe Teresa will be one of the LUCKY ones!!!

Allen is right, though, Teresa. We talk about EVERYTHING. A warning, though. IF Teresa Koch is your REAL name -- you might want to join/rejoin using just a first name -- or a nickname. This is a FORUM. That means that our posts show up in Google alerts and in other ways on the OPEN internet. This is NOT like a closed group with security and PRIVACY. So, you may not want your "personal business" attached to your REAL NAME posted OUT there in cyberland where just ANYBODY can read it.

[jana]

http://www.aapos.org/terms_faqs/faq_...sthenia_gravis

How is myasthenia gravis treated?
Myasthenia is rarely cured, but the symptoms can be improved with a number of different medical or surgical interventions. The main goal of treatment from a biochemical perspective is to increase the amount of acetylcholine available to the receptors on the nerve endings in the muscle. This can be done either by increasing the amount of the acetylcholine itself by minimizing its breakdown, or by destroying the antibodies that are attacking the acetylcholine receptors. Mestinon, or pyridostigmine, is a cholinesterase inhibitor which blocks the breakdown of acetylcholine. This is a commonly used medication to treat the symptoms of myasthenia, but it has been demonstrated that this medication is more effective at alleviating the non-ocular symptoms than the ocular ones.

[jana]

http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

Although often effective, AChEIs (Mestinon) are rarely sufficient alone, and a common clinical observation is that they are even less effective for the ocular symptoms of MG, which are more responsive to corticosteroids. (Page 9)

This is by Dr. Michael Nicolle from Canada.

[allen L]

in the beginning, my neuro was pretty much convinced I should start prednisone, but I refused any steroids.
He said, ok, see how the mestinon works, and was a bit suprised I guess.

[suev]

Hi Teresa...and Welcome!

My experience is somewhat similiar to yours. I am seroneg, 'just barely' passed a SFEMG, had/have a droopy eye and mouth corner (which I never really noticed!). Can totally relate to your comment about laundry -- it was taking me FOREVER to fold!! and I just kept thinking I was getting out of shape way too fast for my age! Then started noticing that I was getting really good at using my left hand to get things done (cuz my right hand/arm just got spent and needed a break).

But when I couldn't play a whole round of golf anymore-- well, that did it. I had something specific to measure against - -and as I went through the dx process, it was getting worse. Like you, I worried about where the bottom was.

Fast forward one year. I have been taking Mestinon and it has been like magic. I slowly started rebuilding muscles and stamina. Now I feel quite good most all the time. It's still there - I have to be careful in the heat and can't always get everything done in a day that I want to....but I am so much better than when I was trying to get a dx.

There are a lot of folks here who have not been as fortunate as I have. But it's important for you to know that there are some MG'ers get along fine on Mestinon alone and are lucky enough to keep their life 'mostly normal'.

Sue