[ras1256]

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.

[watsonsh]

Hey Becky,

I have missdyou. Glad to hear you are making progress with the docs. Let me know what happens with the results of the LP. I am curious about viral connections+CNS.

Oh yeah and

[rach73]

Thanks for the message.

Sorry you aren't doing too well at the moment.

Lp's are awful, I hope the experience wasn't too bad.

I have a friend on another forum who had a negative SFEMG, after a positive one years earlier and was told she was in remission, despite the symptoms worsening. I don't really have much faith in SFEMG's, I can not understand why Drs have so much faith in them, when there are so many variables that can affect the result. Such as the experience of the operator, the temperature of the room, the meds you have taken etc etc. A Dr did research on the actual reliabilty of all tests concerned with MG - Michael Benatar, published May 2006 and all of them proved a lot less reliable than the figures quoted at us by Drs. Basically there is an issue with the way they test the reliability of the tests and the methodoligy they use. Can any Dr say a test is 100% accurate, that would mean no case of MG is ever missed, if its 99% positive that means one case out of 100 is missed.

Unfortunately in this day and age of technology too many Drs are not prepared to trust their own judgement and rely on tests to do that for them. Whats more likely you have a MG flare or you have another condition causing the same symptoms you have with MG?

Hang in there and I hope that you start to feel better soon. Its so lovely to hear from you.

Love
Rach

[maryec]

Becky
So glad to hear from you ! I have an overlap also, that is why I have been going through all my crap, because of the progression. Unfortunately for me my MG shows up full blown with extras added in. I am going to a neuromuscular specialist that Annie knows Sept. 16, I signed a release for my records last month.
Always sweet to hear the word treatable, gets us all excited, doesn't it? lol..... I am so happy your mg seems to be sleeping right now !
Take Care

[ras1256]

I promise as soon as I get the results I'll post them. I really wonder how many of us have the viral condition mucking things up for the docs - they just don't look to that, it seems. PS - The LP caused major, MAJOR spinal headaches and I was having trouble with getting a blood patch to stop them, so I ended up just gutting it out for a week - missed 3 days of work, plus the weekend and just suffered through for a couple more days of work. LP's and I just DON'T get along! LOL. What are you going through on your end with the viral aspect?
back at you!

Originally Posted by Shelley

Hey Becky,

Let me know what happens with the results of the LP. I am curious about viral connections+CNS.

Oh yeah and

[rach73]

My LP results were totally clear. No virus, no abnormalities at all.

I will tell you this though, I couldn't raise my head for 5 days afterwards. I cried if I had to go to the toilet, or sit up to drink. My mum told me afterwards that she had read some people have to put up with the LP headache for years afterwards!

I will never, ever go through that again. Four attempts on an open ward, with just the curtains around my bed to screen me off. I called the Dr doing it an F***ing imbecile, as all the time he messed it up he blamed it on me being fat. Yet his colleague came in and did it first time. He was doing it in the wrong place. I lost the use of my left leg for 24 hours afterwards as they brusied my spinal cord.

I would rather have a million SFEMGS before I would ever do that again!

Love
Rach

[ras1256]

Rach, you poor baby! She did a great job on mine and said she used the tiniest needle she'd ever used for an LP because I got the headaches with the first one I had way back 13 years ago. Didn't help - these were way worse than I remember - like you, sitting up AT ALL or just turning over in bed caused excrutiating pain. Never again!

Do you know that they were specifically looking for viruses in you LP? It has to be ordered to screen for the antibodies- just like with blood work, they pull the same fluid but test differently for different things. My first LP didn't include the viral antibody screen (I don't even know if they could do that way back then) and came back "clean" - no bands (MS and some other types of infections cause them), so we'll see what this one shows. I'm trying not to get my hopes up.

Cross your fingers for me!

[erinhermes]

Oh honey, you have been MISSED! I smiled all day after reading your post!

I am so very happy that you are back @ work! I bet you love being out in the real world again!

I am still at the hospital, but am looking forward to leaving tomorrow - as always, my IV IG has really helped! Everyone here has noticed a huge difference and tells me how much healthier I look! I must have looked baaaad! LOL!

I have also met some of the most amazing people here - I make new friends every time I'm here - I'm so very blessed! There is a woman here who has the EXACT same story as me - except she was dx'ed 27 years ago and was just transferred from ICU to the neuro ward. We are planning on getting together just to play cards and hang out. She is one tough cookie!

I gave poor Mike the night off and have my mom here with me. He has been working his tail off recently and I feel so sorry for him! I bet he sleeps like a baby tonight!

I asked Dr. I about the "acute" label and he was (for once) very pc with is response. The thing I love most about him is the fact that he never sugar coats anything, but I think he could see the fear in my eyes and was very gentle with me. He did say that I "technically" have acute MG, but I am still better than most of his patients and that it usually takes at least 2 years b/4 anyone goes into remission. I am in no real danger. I am stronger now. I am also having the shunt put in (in addition) to the port, that way I can be infused or have the exchange every 4 weeks or so. He takes very good care of me.

I am still torn about going to NY so soon after leaving the hospital. On the one hand I am so ready to see Lilli and on the other I don;t want to be foolhardy and end up back here sooner than expected. I'll see how I feel this weekend and play it by ear, though I have been cleared by all of my drs!

Again, I HAVE MISSED YOU!!!!!!!! I am so glad that you are able to get up and around though!

Enjoy it! You deserve it!

Love,
Erin

[ras1256]

YAY!!!! So glad you're strengthening up. If you go see Lilli, just remember to build in some rest time, ok? Don't let your sis get to you - you've been through soooo much, I hate to see it! I know how important you little niece is though, so it might be good therapy for you, too. Let us know what you decide!

Gotta go to bed - one more day of work, you know. I'm so glad you got on tonight before I had to sign off!!! Lot's of BIG HUGS to you, hon! You're so awesome, sweet and positive.

SMOOCH.

Mama Hen

[AnnieB3]

Hey, Becky. Sorry you're going through so much.

Bi-Polar disorder can be extremely difficult to handle. My friend's Dad had it really bad. He has it but it is controlled. I'm sorry she is going through all that. It's really not something that can be controlled by their mind - only by meds when it's really bad.

How am I? You caught me, I don't like to talk too much about myself because I'm rather depressed. The electrical heart damage stuff really has me, well, distraught because I can't do much.

Just because you aren't showing symptoms doesn't mean whatever was there isn't! Is this disease peek-a-boo?! It could very well be that you have MG, like that one doctor said, but that it's better now that the infection is being treated. It would be nice if you didn't have it at all.

There was a study done comparing the effects of Provigil with that of coffee. No difference! And coffee is "natural" while Provigil is a drug. Interesting.

Whatever is going on, I hope you won't forget us. Let us know the LP results. Just take care of you and try to be happy.

Annie