[erinhermes]

What AMAZING news! That is soooooo flippin awesome!

I know I sound stupid, but what type of MG do you have? I have the generalized MG.......

My goal is to work 6 hr days after the IV IG. I miss being around people so much! LOL!

I bet you are GOING into remission right now! It certainly sounds like it *happy dance*!!!!

09 is going to be our YEAR! Amen!

Big, big hugs!
Erin

Originally Posted by Brennan068

Three weeks down of 4 hour days at work, one more week to go then I get to "stretch" to 6 hour days. I must say working 1/2 time and getting full time pay is sweeeet.

The gym has continued to be great for me, my physio has upped the stakes adding in a bunch of new exercises to mix it up and push me a little more. I have also gone back to my old Tai Chi instructor to start that up again. I did it for 5 years then stopped for 4.... it is enjoyable to be able to get back to it. Tai Chi is great exercise if you don't have generalized MG but I would not recommend it for those who do; there is a lot of putting your weight on one bent leg and holding position for extended periods of time.

Increased muscle mass and tone has allowed me to put on some of the weight I have lost; I'm still mostly fat free though. Up to 125lbs now (heh, "up to..." before MG I was desperate to get "down to").

My MG is well controlled and feels like I may be close to remission. Eating is much better, but there continue to be some problem foods. It is funny, Crab, Lobster and shrimp - before MG I never noticed the difference in consistency and actually thought they were quite similar. Crab slides down without effort, Shrimp I cannot eat much of before it tires my swallower out and Lobster is about half way between. They all remain yummy and worth the effort though.

As far as meds go: I'm sticking with my 90mg 3x a day Mestinon for now, I'll discuss with my neuro at our next meeting (probably July or August) to see what he thinks of my reducing it back down to 60.

2009 is way more better than 08 for me; at least so far.

[erinhermes]

Hi Mary! I am so happy for you! I know I love to clean when I feel better! MY OCD kicks in and there I am vaccuming the ceiling (like that TV show, Monk). I hope to get my closet cleaned and organized next week. Love that IV IG "high"!I've done some hard core shopping since I've gained all my weight, so now my closet is jammed packed with really cute clothes, though I can't wear alot of them due to the weight gain! I'll get there! As long as I'm strong I'm good to go!

Hope this finds you strong!
Big, big hugs!
Erin

Originally Posted by maryec

Funny lady Pat !! LOL......All this rain, has me cleaning !
Mary

[Brennan068]

Mine is technically generalized, but never *really* effected limbs all that badly. The worst thing that happened to my limbs was the muscle loss due to not being able to eat. I was only seriously effected on the left side of my face and neck muscles. My arms and legs are effected but not noticeably to me - my neuro can tell when doing tests though.

Originally Posted by erinhermes

What AMAZING news! That is soooooo flippin awesome!

I know I sound stupid, but what type of MG do you have? I have the generalized MG.......

My goal is to work 6 hr days after the IV IG. I miss being around people so much! LOL!

I bet you are GOING into remission right now! It certainly sounds like it *happy dance*!!!!

09 is going to be our YEAR! Amen!

Big, big hugs!
Erin

[ConnieS]

Hi all of you! Its been a bout a week since i last logged in to check this thread and gosh... 12 pages. lol... great that everyone's checking in here!

Just a quick update, i'm now in a hospital undergoing some tests, been here about a week already and having all sorts of medicine "dripped into" me. Did a emg on mon and gosh. it hurt so badly, hate the part about them digging in my flesh. Survived that test after a gruelling 1 hr odd, and am having the tensilon test later. Was told by docs today that my emg showed some abnormalities, though they didn't specify, and they mentioned that they'll have to do some more tests to be certain about my diagnosis. Its weird though, my emg in Mar showed normal results.

Am okay here, I tried walking around the day before and yesterday, and after 5 mins of walking, i slept for 3 hours. Haha! Symptoms wise, my neck's getting weaker, muscles keep twitching, and chest feels heavy.

But I'm glad the doctors here are taking my symptoms seriously, and are doing all they can to find out whats wrong with me. Am having an allergic reaction to one of the meds they gave me, so i look like a tomato now! I am also put on hormone pills and a whole lot of other pills and bags of drips for the time being.

may be having a muscle biopsy soon, anything i should take note of for that? it sounds scary.. lol.

really miss u guys. do take care alright? Have a great week everyone! will try to login when i can.

[TxSimon]

Originally Posted by ConnieS

Hi all of you! Its been a bout a week since i last logged in to check this thread and gosh... 12 pages. lol... great that everyone's checking in here!

Just a quick update, i'm now in a hospital undergoing some tests, been here about a week already and having all sorts of medicine "dripped into" me. Did a emg on mon and gosh. it hurt so badly, hate the part about them digging in my flesh. Survived that test after a gruelling 1 hr odd, and am having the tensilon test later. Was told by docs today that my emg showed some abnormalities, though they didn't specify, and they mentioned that they'll have to do some more tests to be certain about my diagnosis. Its weird though, my emg in Mar showed normal results.

Am okay here, I tried walking around the day before and yesterday, and after 5 mins of walking, i slept for 3 hours. Haha! Symptoms wise, my neck's getting weaker, muscles keep twitching, and chest feels heavy.

But I'm glad the doctors here are taking my symptoms seriously, and are doing all they can to find out whats wrong with me. Am having an allergic reaction to one of the meds they gave me, so i look like a tomato now! I am also put on steroids and a whole lot of other pills and bags of drips for the time being.

may be having a muscle biopsy soon, anything i should take note of for that? it sounds scary.. lol.

really miss u guys. do take care alright? Have a great week everyone! will try to login when i can.

Connie,
Keep the faith and know that we are thinking of you! Glad you have doctors who are being serious about your conditions. Just know that we are here for you. Keep us posted.
Simon

[ras1256]

Hey Xmas,
I've seen a couple of posts where you have mentioned you need help differentiating what you're feeling. I can tell you how this goes for me.
When my MG is starting up, I don't feel like going to work, putting on make up, doing my hair - or even care what clothes I wear. After it's gotten going badly enough that I can't go to work, there are many days I never even get out of pj's, brush my hair or anything but absolutely necessary things (food and toileting!).

When I feel good it's actually difficult to keep me from doing more than I should. It's like when you were sick as a kid - when you felt better you FELT GREAT! It's the same here - the relief from the fatigue and weakness of MG make you feel better than you really are, so you have to actually train yourself not to do as much as you feel like doing.

Being out of shape won't keep you down, once you feel good.

The hardest is the difference between the disease and too much Mestinon. Too much can cause the weakness and fatigue as well. Watch for excessive perspiring, and muscle twitching. For me, my "normal dose" can be too much in the morning, but not enough in the afternoon. It's quite the balancing act, when you start to get better especially. My neuro when I went into remission had a terrible time getting me to stop taking the Mestinon. I was scared to death to go without it, but I actually got better when I stopped (until I came out of remission again anyway).

I hope this helps you. I know it's so confusing and after the struggle to get diagnosed and having people tell you you just need to get up, or need to get back in shape (My doc told me that before I was dx'd), or you're lazy, it's easy to think that's what's going on. Believe me, though, when your MG gets under control - NOTHING will hold you down!

Originally Posted by xmas 25

how awesome that things are going great! it gives hope to me-i'm in the baby stage of learning mg,limitations,meds etc. i pray for those days of mostly endless energy. i wouldn't even mind just laying down for 1-2 hrs in afternoon. how do you differentiate being out-of-shape,in a lousylazy rut or the medicine side effects or the disease itself?that seems to be my problem. i'm afraid to push it but not sure of what i feel? thanks for showing the light at the end of the long tunnel!!

[erinhermes]

Hey hon! I am so very happy for you! I know it is awful being in the hosp, but at least they are finally listening to you! AMEN!!!!!!!!

The EMG is rather painful. I told my neuro that - he knows my fear of needles and never mentions that part until I hear him pulling on the gloves - blood everywhere - yuck! I don't mind the other part - the electic stuff going through me, but the needle still freaks me out!

Do the drs have any idea what you are allergic to? Are you feeling better @ all with the meds? How long do they plan on keeping you there?

We have missed you!!!!!
Big hugs!
Erin

Originally Posted by ConnieS

Hi all of you! Its been a bout a week since i last logged in to check this thread and gosh... 12 pages. lol... great that everyone's checking in here!

Just a quick update, i'm now in a hospital undergoing some tests, been here about a week already and having all sorts of medicine "dripped into" me. Did a emg on mon and gosh. it hurt so badly, hate the part about them digging in my flesh. Survived that test after a gruelling 1 hr odd, and am having the tensilon test later. Was told by docs today that my emg showed some abnormalities, though they didn't specify, and they mentioned that they'll have to do some more tests to be certain about my diagnosis. Its weird though, my emg in Mar showed normal results.

Am okay here, I tried walking around the day before and yesterday, and after 5 mins of walking, i slept for 3 hours. Haha! Symptoms wise, my neck's getting weaker, muscles keep twitching, and chest feels heavy.

But I'm glad the doctors here are taking my symptoms seriously, and are doing all they can to find out whats wrong with me. Am having an allergic reaction to one of the meds they gave me, so i look like a tomato now! I am also put on hormone pills and a whole lot of other pills and bags of drips for the time being.

may be having a muscle biopsy soon, anything i should take note of for that? it sounds scary.. lol.

really miss u guys. do take care alright? Have a great week everyone! will try to login when i can.

[ras1256]

OK. Time for another update.

I've pulled off a 40 hour + work week, but I don't think I want to do that again for a little while. I was so tired Friday night!

I have also done work in my hubby's office, done some cleaning, alot of visiting with my in-laws and neighbors, played with my dogs on a daily basis, and walked my 3 acres a bit! I'm loving life again, but do still have a few residual problems. I don't think the maintenance dose is high enough for me, so I got some Lysine to help boost it - my rash is much better, but I still get little sores here and there.

ERIN - Lysine helps with cold sores - my daughter was getting one and I gave her some of my Lysine and it was much less severe than normal - and she didn't even take it as long or as much as I suggested!

My energy is way better, my strength and balance are way better, and my peripheral vision (which I didn't even realize was bad) has improved a lot. I still occassional get the heat sensation, and of course my MG isn't back under control completely yet so the heat still wipes me out big time!

I was thinking about backing out of the MRI and appointment with the MDA doc, but I'm thinking I will go ahead with them - just to be sure! Maybe if they will go along with this viral aspect, they will recommend the proper anti-viral dose for me and I can get the rest of my symptoms completely gone! I'm getting greedy!!!!!

Mary, I'm so glad your back is feeling better, and I couldn't find any info on how an EMG might be affected by TM. I'll ask the neuros when I see them the end of this month though.

Connie, it's so good to hear you are getting such thorough care! I love that the docs there aren't looking at just one thing, but looking for any and everything that may be causing your symptoms!

All of you, I think of and speak of you often. I tell everyone I know about this site and how brave, positive and helpful you all are. I miss being able to hop on every day to keep up with everything! This is this most wonderful bunch of people I've had the pleasure to associate with in my life. I am truly a very lucky and blessed person, and you are all a big part of that.

I'll be hoping for great care, wonderful resolutions, and strength for all of you!

SMOOCHES!

Becky

[erinhermes]

Hi there! Are you sure we aren't related? We sound so much alike! I am the exact same way - know that I am going downhill FAST when I no longer am willing/able to make myself up for my hubby/son, etc.........even brushing my teeth can be too much...hate that feeling!

Now I've just GOT to do is lose weight in a HEALTHY way....no skipping meals, no meal replacements, etc, but I've got 40 lbs to lose - the most I've EVER had to lose in mylife. My neice saw a pic of me a year ago and said "Auntie, you don't look like that anymore - why?" She was not being ugly, she is 7 and curious. I don't think she even remembers how I used to look....*sigh*

You are soooo right about not overdoing it! I have a tendency to to that and then am worn down, though I do know that this year is gonna be FABULOUS! I've even thought about going into nursing or volunteering @ the hosp where they have taken such good care of me. Then I plan on fostering. It feels so good to have energy again! We had a party for my stepdaughter on Friday, right after I left for my LAST IV IG treatment and had my PICC line pulled and then had my neice over Saturday...we has a girls "spa" day.....I was also able to clean my home and spoil my family and dogs! Woo-hoo! Guess what? I still feel GREAT! Maybe remission is right around the corner!

I have missed you!!!!!

Big hugs!
Erin

Originally Posted by ras1256

Hey Xmas,
I've seen a couple of posts where you have mentioned you need help differentiating what you're feeling. I can tell you how this goes for me.
When my MG is starting up, I don't feel like going to work, putting on make up, doing my hair - or even care what clothes I wear. After it's gotten going badly enough that I can't go to work, there are many days I never even get out of pj's, brush my hair or anything but absolutely necessary things (food and toileting!).

When I feel good it's actually difficult to keep me from doing more than I should. It's like when you were sick as a kid - when you felt better you FELT GREAT! It's the same here - the relief from the fatigue and weakness of MG make you feel better than you really are, so you have to actually train yourself not to do as much as you feel like doing.

Being out of shape won't keep you down, once you feel good.

The hardest is the difference between the disease and too much Mestinon. Too much can cause the weakness and fatigue as well. Watch for excessive perspiring, and muscle twitching. For me, my "normal dose" can be too much in the morning, but not enough in the afternoon. It's quite the balancing act, when you start to get better especially. My neuro when I went into remission had a terrible time getting me to stop taking the Mestinon. I was scared to death to go without it, but I actually got better when I stopped (until I came out of remission again anyway).

I hope this helps you. I know it's so confusing and after the struggle to get diagnosed and having people tell you you just need to get up, or need to get back in shape (My doc told me that before I was dx'd), or you're lazy, it's easy to think that's what's going on. Believe me, though, when your MG gets under control - NOTHING will hold you down!

[Pat 110]

Hi Becky,

I am so happy for you! I think it's a good you're still going through with the MRI and covering all the bases...why not? I hope they increase the anti viral meds so you can continue to do so well. You are such a wonderful person and an inspiration to us all. Take care, and I'll be keeping you in my thoughts & prayers.

Hugs,
Pat