Hi everyone!
I'm sorry I've been gone for so long - so much to tell - but the basic jist is the same ole same ole. I seem to be having trouble making the jump to 40 hours from 36 hours. By Thursday I just don't care anymore, and by Friday I'm really dragging. Saturday is spent mostly sleeping, then Sunday trying to catch up with all the bills, our company's office work, laundry, etc.

I've had a close friend run into a WIDE spot of trouble, so I've been trying to help her with that. She's bi-polar but not able to afford the meds so she went off them and is completely unable to focus on anything now - it's such a vicious cycle. I keep trying to get her to at least go to the county free clinic (would be for her, anyway), get the script then I can help her get the meds at low or no cost, but she keeps running into more trouble. I think this has been affecting my energy too, cause I really love her like a little sis and hate what's happening to her. I'm really scared for her - she's put herself in some very scary situations lately, and paid a price - she was just beat up by some guy trying to steal her car.

A brief update on my tests, etc. I had my SFEMG and thought they were telling me I NEVER had MG, which caused some major mixed feelings - I went through that sternal thymectomy for nothing???? - Flip side - woo hoo no MG. But during my LP I had quite a talk with one of the docs involved in the SFEMG and she said, no - it just showed that the MG is not active and possibly in full remission, therefore not causing my current fatigue and other problems. There is no evidence of neuro-muscular disease at this time. I guess that leaves CNS or ???? I have a follow up with my regular neuro to go over her discussion with the MDA neuro's and tests and what's next.

I don't have the LP results yet. I hope they are in before my appt. next week. They are looking at those viruses in the spinal canal, amoung other types of infection due to the rash. They agree that what I feel happening could be possible with an infection in the CNS. The "other" thing starts getting worse and worse, then the MG weakness kicks in for a while, then I go in and out of the "other" symptoms. She (one of the MDA neuros) says it could be pulling from remission or reactivating MG while the infection flares. Who knows - I've given up trying to figure much out at this point. This set of docs have seen enough to realize there is something going on and seem willing to look, so I'll let them go for it!

Erin, please please please be very careful with yourself. Annie gave you wonderful advise. I wouldn't worry too much about the "acute" tag because the docs are aware of it and caring for you on that basis. Being in your condition and not having it identified might put you in that 15% bracket, but I'm not even sure then. You are a strong, wonderful, positive young woman and that attitude has so much to do with the outcome.

Connie, my heart is just breaking for you. I have some of your symptoms to a much, much less degree but I can only imagine the physical, emotional and mental turmoil you must be in. All I can say is that you truly are an inspiration to all of us with your courage, and continued caring about others. Keep in mind that even if it is ALS, there are survivors out there. Do you know who Stephen Hawking is? He's brilliant and has made such a contribution to science even though he was diagnosed with ALS at, I believe, 21 or 22 years old. He was given 2-3 years life expectancy, but he is now in his 60's! I think of you every day, and will join the chant for a lesser disease, or better yet a miraculous reversal of your symptoms. We all love you, honey!

Mary, you took of your very fashionable picture! What's up with that? I'm getting fat and sassy and was looking forward to using your picture as inspiration to loose this excess! (wink, wink, nudge, nudge) How are you and your dx's going? I tried to read as many posts as I could, but I'm running out of steam so I thought I'd better get to this. You take care!

Rach - hooray - FINALLY! It is helpful to have a family member in the know with you at your appointments. Their experience is the day to day ups and downs you have, so the docs get a more clear picture. When it's just us there, it seems they're too focused on looking at us an stuck on what they see that minute in front of them. Another person involved seems to make them broaden the view and open the minds a bit! I'm so glad you got their attention by whatever means, cause you were doing so badly!

Pepe - I may have missed something, but what form of Lupus were you dx'd with? SLE or the other? My sister-in-law has the non-SLE form (can't remember the name) and she runs circles around me. The have her controlled very well with her meds - not to say she hasn't had to make modifications in her life to help that along - but it is possible to do fairly well. You'll have to be extra careful though, having the double whammy with MG as well. I'm so sorry you got smacked with both!

Annie, it's so good to read the wonderful advice your giving. How are you doing, yourself? I always see you helping, but having seen any post about how things are going for you? I hope you're doing well!

Pat, you are such a sweetheart with such wonderful encouragement. It's good to hear that you are doing fairly well, but sure wish you could get more consistent with the good days!

Everyone - I'm sorry I am out of poop here and have to go. I wish the days were longer and the stamina better, but I sure can't complain too much. I'm already thinking about how I'm going to manage the holiday season this year so I don't cause my anual big crash in early spring. Maybe they'll find my virus, bump my antivirals up a bit, give me some Provigil for energy, and make my body feel like I think - 30 or 40 would work just wonderfully

It may be a while before I can get back in here, so everbody please take care, follow what we all know we should do, but all have such a hard time doing (rest, pace ourselves, blah, blah, blah - we all know the drill) and I hope I hear lots of good news next time with summer heat backing off a bit. I'm gonna try real hard to get on this weekend - 3 whole days to rest and relax!!!

Missed you all, but thought of you all daily! Take care til next time.

Love.