[ras1256]

Hi everyone!

Goodness, it's so hard to keep up with everything when you can't get in too often.

Just wanted to let you all know my tests results, and what the neuros have to say about me now. I was negative for the virus in the spinal canal, but she says I apparently have something systemic going on because my white cells are elevated on every blood draw. Looking back they were clear back in 1996, too. My rash still gets worse when I get worse (or vice versa?) but the antivirals help alot. When my SFEMG came back negative, they made it sound like I NEVER had MG, but upon further questioning, they say they believe my MG is controlled - which I have come to understand only means I don't have to take meds daily and I'm more or less functional. It doesn't mean I can do whatever I want!

I saw the posts about MG remission by Annie and others, and it was right on! We have learned that I can backslide from invasive medical procedures, so I have to allow a couple of extra days to recouperate my strength following those. I had to have my brain anneurysm coil checked a couple of weeks ago and what normally would've been a one day out of work thing turned into three!

And I pushed a little hard last week and by Friday afternoon, my legs were getting wobbly, so I hope all of you that haven't had lots of experience with the disease yet can understand from this that if I am limited in a controlled remissive state, you who are not yet controlled have to really be careful!

My neuro says that she is going to lump my secondary condition into the Chronic Fatigue arena for now - until "you progress further and we can identify it, or we get smarter and can identify it". I liked how she put that last part. She'll still be seeing me on a regular basis to monitor, and gave me a rx for some energy. Interestingly, it's a drug that was developed for fighting Infuenza A virus, but they've discovered it works better on Parkinsons and MS fatigue.

Shortly after that visit I read that they have identified a virus that appears to be the cause of CFS! Imagine that! I tell you, I really am beginning to think that viruses are the cause of so many of these wierd diseases that they can't figure out. Many viruses themselves are still invisible to researchers, but they are able to identify them through the antibodies associated with an illness.

I also had my annual visit with my cardiologist for my insufficient aortic valve. He felt that the med he had me on may have been contributing to my extreme fatigue, so he pulled me off it (I was on a very low dose, just was just able to stop), but my heart started it's pounding again, so we're trying a new one. He was right about the Toprol and the fatigue, I believe, because it's not nearly so severe now that I'm off it.

That's all my little pearls of learning for now. I'm coming into my really busy season at work now through April, so I'll be in super conservation mode. I'll try really hard to check in, or if something big shakes I'll be sure to let you all know. In the meantime, please all of you take good care of yourselves. I miss you guys!

Love, peace, and strength to all!

[Joanmarie63]

My, you have been busy! Don't you wish we could all have a genie in a bottle and wish this all away! Thanks for keeping us updated, it was good to see a post from you.

[AnnieB3]

Hey, Becky! I'm glad you are doing okay.

That's very evolved of your doctor to say they don't know everything but let's care for you until they do! I like it.

Remission would be great. I think of it kind of like remission and cancer. Someone can go into remission but they still have the risk of having the cancer come back. It's a hard thing to live with.

How insufficient is your valve? Is your blood pressure high because of it? I'm asking because my Dad had rheumatic fever in the Navy and it damaged his aortic valve. He couldn't have it replaced until the 80's. Years of undiagnosed high blood pressure had caused kidney failure. Has anyone checked your kidney function?

Also, some people can have strep in their bodies, attacking tissues. You don't have to have a sore throat. There's a blood test called a strep titer that they can run to see if you have it "somewhere" in your body. It has been implicated as causing some cases of Tourettes. Just a thought.

I'm glad you stopped by to say hello! I hope you continue to feel better.

Annie

[rach73]

Thanks for the update, as the others have said you've been a busy girl.

Hope you are feeling ok

Love
Rach

[Pat 110]

Hey Becky,

So nice to hear from you! Sounds like you're doing pretty good and keeping busy. Glad the Dr. found the source of some of your fatigue. I'm going through that with a PB med as well. Only taking half seems to be helping and my BP is just passing. Take care and hope to hear from you again soon.

Hugs,
Pat

[maryec]

Becky
Thanks for checking in with us, it's hard when you have all that you have been going through, hope the new meds help !