Thanks for the update. I was so glad to read that you're going to be given the proper tests, but a doctor who evidently knows what he's doing. This is wonderful news.

I don't mean to minimize the suffering of people who have MG, but it's not as devastating a diagnosis as you might think. Remember that the people who post here are mostly in the thick of it--I think that the people who go into remission, or whose symptoms are so under control that they're not interfering with daily life too much, tend not to post here. So you could get a false impression by reading this forum.

One of the (relatively!) good things about MG is that it doesn't usually keep getting worse and worse, like MS, for example. Another good thing is that a lot or all of the symptoms are reversible, especially if it's caught early. It's also usually not painful, and doesn't usually mess with your mind or your bladder (two capacities I, personally, hope to keep under control). It sometimes goes into remission spontaneously, and it often goes into remission under treatment.

I hope you get a diagnosis, and that having a diagnosis lifts some of your mental burden. I felt so much better when my disease got a name. It was so hard not knowing what was wrong, or what it was going to develop into. I'm also not strong-minded enough not to doubt myself (I wondered at times if it was "all in my head").

Thanks for the update.

Abby

The other "good" thing about getting an MG diagnosis is that you can "forgive" yourself for feeling tired (if that makes any sense).

I couldn't understand why exercising always made me SO tired - especially since all you ever hear from people is how great it makes them feel, and how if you are tired all the time, "You just need to exercise".

Well, YEARS before I got an MG diagnosis, I couldn't stand to exercise because it made me feel worse, not better (it didn't help that I kept gaining weight, either - "You just need to exercise!"). And the longer I tried exercising, the worse it got.

Well, now I know why.

And now I can tell people that I CAN'T do strenuous exercise, because it quite literally could kill me. Shuts 'em right up..... :p

I sometimes explain to my herbalist friends (just take this supplement! It builds up your immune system!) that I can't take anything that strengthens my immune system, because it's too strong already. I tell them that I have to eat a lot of junk food and make sure my diet is really poor, because everyone knows that weakens the immune system.

This is utter nonsense, but it does make them get very quiet and back away slowly.

But seriously, folks, I am still learning the lesson about forgiving myself for being tired. I have been diagnosed for almost a year, and I know the effect this disease has on me. But it can be subtle! Before my latest IVIG, I kept thinking, "What's wrong with me? I don't feel like doing anything! I've become so lazy!" The thing is, I notice when a muscle is weak, like if I can't hold up my mug of coffee, or I collapse, or if it's a strain to hold up my head. But if I have mild, general weakness, I don't notice it explicitly--I just feel like I don't want to do anything.

After my recent IVIG, I caught myself thinking, "Why did I think this [you know, normal life] was so hard? I can do this."

I just wonder how many times I'm going to have to learn this lesson before it sticks.

Abby

Another member of this forum, someone who is very knowledgeable and for whom I have great respect, has written to me privately to question the accuracy of some things I said in this post. I thought that by using the word "usually" to qualify them, I was being careful, but now I see that my friend is right: what I wrote doesn't give an accurate picture.

The statements I'm referring to are: that MG doesn't usually cause pain; that it doesn't usually affect the bladder; that it's not usually progressive; and that symptoms can be reversible (I see that I especially overstated that last one).

I have read that these things are sometimes true, but I was saying more than I know when I used the word "usually."

Rather than just remove my post, I'm adding this comment so that anyone I misled is more likely to see my retraction. I won't name my correspondent without permission, but I invite that person to elaborate here.

I especially didn't mean to suggest that the people posting here were here only because they're sick, and not to help others. I certainly know that that's not true! I have received so much from the generosity of people here.

I'm sorry for my carelessness.

Abby

Hey that's OK we are all just trying to help!

Well, Abby, I'm clueless -- AS USUAL -- LOL!

It is hard -- at least for me -- posting in a forum. I rely SOOOO much on facial "clues" when I'm talking to people. And, also, knowing a LOT more about personal situations helps me.

Regardless, I end up stepping on toes and putting my foot in my mouth ALL the time!!! And, my brain fog, I'm sure, doesn't help one bit.

I guess.....I think.....well, I'm trying to see what you and the person who contacted you were talking about -- still not sure. Maybe it is the Topamax messing with my brain this morning.

When I read your original post, I took it "personally". I've been sort of having a "pity-party" of late. The first five years of MG were "bearable". But, this past year.........................not so much. And, I've been whining and complaining about it to my family......a LOT!! Then, I read the "newbie" saying (hell, I might have MG). and it just sort of "slapped" me in the FACE!! I mean, EVERY TIME I go to my MG doc, there are such pitiful people in the waiting room. People who can't walk or talk or hold their heads up from OTHER conditions -- some are dying (from ALS) -- and I'm sitting here having a big ole pity party about MG!! So, when you posted, it just made me sit up and say, "Hey, get on your big girl panties and count your blessings!"

I know that your original post wasn't INTENDED for me -- but, it HELPED me!!

Anyway, I hope you and the person who PMed you are ok. I think you are mighty special -- and I hold other members of this group in very high regard. I learn something almost everyday -- medical or about how to live.

Hope what I've said made sense -- and that I haven't "stepped on toes". :o

:grouphug:

I tell them that I have to eat a lot of junk food and make sure my diet is really poor, because everyone knows that weakens the immune system.

You owe me a new keyboard..... :p

Oh, thanks, Jana, you are so sweet to be concerned! The person who wrote to me did the right thing. I'm not upset--just glad to have the opportunity to correct myself.

It's so hard to find a balance when it comes to having the right attitude towards this disease, isn't it? Today I am especially discouraged, because I had my hopes up that the IVIG, especially with this new plan to give me boosters, would give me back my energy. I don't think it's healthy to pretend everything's fine when it's not...but on the other hand, I don't want to waste my energy on unproductive self-pity, either. I'm still figuring all of this out.

Thanks for your post.

Abby

Stellatum said:

" But if I have mild, general weakness, I don't notice it explicitly--I just feel like I don't want to do anything."

SO THAT EXPLAINS IT!!!!

I struggle with this about 5 days a week. I ponder over and over, am I lazy, am I depressed, what is wrong with me, I used to have to fight myself to stay in bed, why is it that now I don't want to get up? Then I say I'll just get up and bake something, or this or that, then I get up and I just don't FEEL like it, and I get back in bed.

I keep telling myself I've become too accustomed to being in bed, but meanwhile I"m sleeping 12-14 hours a night and feel exhausted! I also have a chronic bacterial infection or 4, so it's hard. I sometimes have a few decent days where I can pop an Adderall and accomplish stuff for the day, maybe one day a week on average. I remember when I had to wrangle myself down to stay in bed one day a week ( but that was pre MG and just when I had Lyme.)

Your line here made me feel SO MUCH BETTER about my laziness!!!

Back to my original subject ad a little update:

I saw my state funded (in the UK) neurologist and he has ordered a load of blood tests (myasthenia tests amongst them) and I await anxously, whilst my progressive dysphagia does not.

He also ordered a MRI of the soft tissue and the repetitive singe fibre EMG.

I actually hope its MG - weird as it sounds. Thats seems to be the only possibly treatable on on the list!

Flash