Wishing you the best Kerry and prayers that it brings you relief from symptoms at the very least! Will keep up on the blog but be sure to keep us updated here too!
~sherry

Hi Kerry - I read your blogs (and have seen some of your Youtube postings). Whew. You've got a lot going on.
I won't take too much of your time. Except to say: the Periodic Limb Movement Disorder, diagnosed in you? Sounds almost exactly like the Cramp-Fasciculation-Syndrome, diagnosed in me. (There appear to be other designations, as well.) I receive tremendous benefit, treating this CFS, from small doses of: baclofen, gabapentin, lorazepam, potassium, and magnesium. I also have MG, and know that many MG patients are told - that magnesium is contraindicated for MG. But the small doses I take? Don't seem to have a negative effect on my MG.
You have a lot on your plate. Best wishes to you, and prayers for strength.

Home from first day of chemo at Vanderbilt. Doing well! More later.
--Kerry

I'm glad to hear you did well Kerry. I'm off to your blog to see if there's more info there. Prayers for you to improve, improve, improve!
Cathi

Thanks again for the prayers and support. Here is what I wrote on my blog this afternoon.

I have completed my first IV Cytoxan infusion for Myasthenia Gravis at Vanderbilt's 100 Oaks Medical Infusion Center. We arrived around 12:30 PM for my 2:00 PM appointment and checked in early. Things went very well.

The treatment procedure will be the same every time. First, I have blood work and an urinalysis. If all results are in allowance, they proceed with the infusion. Second, I am premedicated with Tylenol, Benadryl, and Zofran. I am then hydrated with a normal sodium IV solution for about thirty minutes. Third, I receive one gram of Cytoxan through a one-hour IV drip along with more saline. Finally, after about thirty minutes of more hydration I am released to go home.

I have had no bad effects from the Cytoxan. I have drank and drank and drank lots of water yesterday and today. The nurses suggested I take my Promethasine every six hours for the next few days to keep down nausea. It seems any side-effects from Cytoxan are not immediate; they come a day of so later. So far, so good!

Now we wait for the next infusion and signs of improvement. More to follow later!

Thank you for the update on your new treatment Kerry! So glad things went well. Hope you have an "easy" next couple of days!
~sherry

As of today, Monday, September 12, 2011, the IV Cytoxan for my MG has been less of a problem for me than IVIG or PLEX. I hope it continues that way.

Sounds great, Kerry! Glad things are going so well. How are the veins doing? b.

Beth:

As far as I know my veins are doing OK.

If has been five days since my first Cytoxan infusion. At this point-in-time, the Cytoxan has been much less of problem for me than IVIG or plasma exchange. Since the effects of Cytoxan are cumulative, we shall see how things progress over the next few weeks. My next treatment is in October.

Kerry, so glad things are going well for you. Said a prayer that this treatment continues to treat you well.