Twisted good news update

[flutterby]

Saw my GP today. She checked my eyes to make sure there was no damage to the eye itself and no numbness or pain. She first wants me to go to an ophthalmologist to get an injection to stop the twitching because the drooping can become permanent and we don't want it to get worse.

I start seeing a physiatrist next week and he does ENG's, so she wants me to ask him if he's comfortable testing for Myasthenia Gravis. If he's not, she will get me in with a neuro who specializes in Myasthenia Gravis. When I told her of the pitiful test that my neuro did, she wasn't impressed.

So, that's where we're at with that. Still twitching and still drooping. It gets worse the more tired I am and with increased stress, i.e., when I talk to difficult child. *snicker*

This would be a good diagnosis to have. With treatment, people are known to have long periods of remission. That would be really cool. I would like that a lot.

 

[KTMom91]

Hugs. Hope the appointment next week is a forward step to a diagnosis.

 

[Marguerite]

Hoping for good news for you. Or definitive news.

Taking/prescribing neostigmine can be scary, because of what it can do to your heart if it is not the right drug. Chances are they will want you to take the first dose while in the surgery, so if there are any problems, you're on the spot. You also have to avoid alcohol. mother in law doesn't avoid it as much as she should, and when she'd had a drink or two her face gets blotchy red and hot.

Marg

 

[flutterby]

I might drink once a year at most, so that won't be a problem for me.

 

[susiestar]

I hope that whatever it is, you get treatment that helps you feel a whole lot better very soon.

Years ago they thought stepMIL had this. At the time the literature was very very scary and I am glad it is a far more hopeful diagnosis now. In her case it ended up to be something else that was due to a prescribing error by her doctor.

It is amazing how much more we know now than we did even 2 decades ago. Imagine what we will know in 2 more decades. Maybe by then they will be able to fix all this crud fairly easily?

 

[Star*]

HOLY crud - WHEN did they diagnosis you with MG? Where have I been?

Oh honey I am so sorry!

 

[flutterby]

Star, I haven't been diagnosis'd with MG. I have the symptoms and I've kinda-sorta been tested for it. But, now I have the droopy eyelid which is kind of a hallmark symptom. So, now I'm going to be aggressively tested for it.

This isn't necessarily a bad thing. If I have it, it means treatment. It means hope.

 

[tiredmommy]

Hope is good.

 

[Star*]

Well then I'm ALL for hope. You need some kind of closure/solution/treatment on all this pain.