I'd like to buy a vowel please

The anticipated lab results from the spinal tap, came back this week. Seems that my test are much the same as they were in late 2008. The spinal fluids still indicate elevated marks on the MS panel and on one other test. All of this remains a foreign language to me.

The element that has truly changed is the new spot on my brain. This was not present in my last MRI (late 2008). Couple this with the odd visual disturbance experienced in mid-June, and it sounds like the makings of MS. Evidently, there is not an easy yes/no test available to determine if you do/don't have this condition. So we wait.

What?! Wait, why wait, why not medicate now to prevent/slow development of more spots? Our plan is to do another MRI in 6 months to see if any additional spots show up. In speaking with others impacted by this disease (and more clearly diagnosed), it seems that someone may have a flare/episode once, and never experience that again. Others have more consistent symptoms. Rather than adding another medication to the routine, we'll relax and wait to see if something more happens. It could be that I'll have one spot only and nothing more occur, other than MG symptoms. Who knows...

It is common for those with autoimmune conditions, to develop other autoimmune conditions as well. The combination of MG & MS is rare, but it does happen. The two conditions are very similar. MG and MS have very similar symptoms and sometimes have the same treatment plans. Maybe I've had both for a while, since the labs are consistent. Maybe I really have one and not the other, but my positive MG test and brain spots make that unlikely. Maybe I have a new form of *awesomeness* called MMGS, that only the most super cool people on the planet can have! ...yeah, I like that version best. Lets go with it

Time for the weekend, enjoy all!

Also Known As

Well helloooo there! Its been a while, and thanks for reading. Its so much fun to learn who's popping in to keep up with us. I can't thank you enough for reading along, and for your prayers.

Tomorrow, I go in for another spinal tap...I mean 'lumbar puncture'. I'm not sure that one or the other sounds better, and sometimes its just called LP. Yeah, this is that nasty procedure where they poke ya in the spine and let you drip a little bit of spinal fluid into a vile. We've gone through this twice before, last year, when trying to diagnose the MG. The LPs were intended to rule out MS, and we had. Now, we're hoping to rule it out again.

Through a series of events, I had a MRI 2 weeks ago, and it turns out there is a spot or 'activity' (no jokes) on my brain scan that wasn't present a year and a half ago. SO...we need to test the good ole spinal fluid again, to see whats going on..or not going on I suppose. Thank goodness we know what to expect with the procedure, and no matter what comes back from the test, we're ready.

As it is, people with auto-immune disorders are very likely to develop additional conditions. Go figure! I suppose with your body compromised, anything is possible.

We ask for your prayers, and again thank you for each one. If there is *anything* we can pray for in your world, please let me know! Most have my email, but if you do not, post a note and we'll connect. All we can do is 'pray it forward' right?

Rest, Reset, Rest some more

..and we're back. Back in Austin, and back to work. Yesterday we were up early to the airport, arrived safely, picked up cars, dropped off bags, picked up lunch on our way to work, and I even had a treatment! Whewww... What a fun trip Lee and I had back home. We spent lots of time with family, ate, played outside, slept, travled into N. GA, went to church with Ma & Pa, played with sparklers, ate, and ate some more.

Travel is rough with MG, regardless of how much you sit still and do nothing during that travel. Once in Texas again, my speech was slipping quickly and my eyes crossed. SO glad we had a pheresis treatment scheduled. It helped my mouth loosen some, and my eyes are much better today. Now, I still sound funny, my eyes are weak and by the end of the day I will see double..and that's ok, because I expect it, and can rest tonight.

In speaking with a coworker just now, who has dietary/medical craziness in her life, we share much of the same struggles. We each go through so much trial and error simply trying to understand more about what we have and how best to manage our lives. The small things, like testing how long you can go with out treatment or how you might react to a different variable (food/medicine/treatment), helps understand more and that helps remove worry. We can't control any of this (most important realization), but we can do our best to manage it (second most important realization). Anything after that is gravy! ...beef gravy even, because that's my favorite. Who invented that white sausage gravy anyways...its just not right ;)

Think I'll look for country fried steak and gravy for lunch now...yum...

Ahhhhh GA!

One week later, and I'm in such a better space. The symptoms have pretty much passed, so it feels like we are back on a 1 week 'bad week' cycle. Like I've said before, every time I feel like the life cycle of this stupid disease is making sense (to me), the rug pull out from under me...so I'll just sit still and not worry with trying to control it. My eyes are still crossing at the end of the day, but with rest, that's tolerable.

Today is Saturday, and we're in Georgia. My home! We arrived late Thursday, and will leave early Tuesday. Travel is always tough with MG, but thanks to a very protective family, I get to relax and be worried over. Yesterday we learned my Aunt Dot passed away, and I am so grateful we can be here with my Dad at this time. What a blessing that she is no longer in pain, and that her family was with her.

Tonight, dinner with my sisters and their men, Tomorrow church with the parents, and Monday my sisters and mom and I are going to try on wedding dresses!! Wahoooo...I prayed last week that my symptoms would pass, so that I could really enjoy this trip and all that would be taking place. So YAY for lack of symptoms right now, for fresh vegetables out of the garden, and for naps. Speaking of...its time to rest.

Happy 4th of July weekend all!