OK, I just tried to answer everyone else, but took too long I guess. I'll try again in a few! Also, intend to get the virus details posted tonight, so check back soon!

Love ya all!

One more time!
Hi All - I'm gonna try to type REAL FAST so please forgive typos!

Christy - Love the leaf blower idea :) I never would've thought of that, and I guess I should be glad you thought of it first! My hubby doesn't do bathrooms or baseboards, so it may have occured to me sometime. I hope you are going into a remission! That would be so wonderful, but remember it could be the "ebb and flow" thing so be watchful so if you start weakening you don't over do it. We'll just keep pulling for the remission thing though - GOOD LUCK!!!!!

Kate - the "snarling" got a good giggle out of me - what a mental picture I had! It's amazing how the body compensates for things without us even knowing it's doing it, huh? Hope you have a great time at your aunts dairy farm - my grandma had a farm that I would spend a couple of weeks every summer at as a child. What fond memories! Enjoy and relax and get rid of that droop while you're there, huh?

Connie - it's very interesting to me that MG is virtually non-existent in Singapore. It makes me wonder what's different in the diet and lifestyle that saves them from it! I'd read that the closer to the equator one spends their first 15 years the less chance of developing MG, but there has to be more to it - surely they're just as mobile there as the rest of the world. Good luck with the overseas trip to see a neuro - I hope you get a good one that can get you your dx and treatment in short order!

Rumpled - Re-dx'd - I've been there, and still it's questioned. So frustrating, I know!
With your mother showing signs, have your neuro's considered Congenital Myasthenia on you? The mechanics are different - not an autoimmune but a genetic cause so it won't show in the blood but will on EMG or SFEMG. I can relocate a link for you if you'd like and post it for you, but I think it may be a possibility. That might also get your mother to another (yours?) neuro for further testing. Also, hope the kittens are keeping you entertained. I know our two pups make me laugh just watching them, and that's good medicine you know! :)

Whirwind - I'm so glad to hear you're doing better. You seem much more relaxed in your post. That swimming pool sounds awesome and I hope it'll help you too - I know when I am in cool water I feel so much better and my stamina is a lot better! As for being an Aflac commercial - don't feel bad; my dad always said I was like a bull in a china cabinet! Maybe I do have the congenital MG if I was always clumsy!

Stephanie - AAAHHHH Massage! Love it. I have found the best CMT ever! I've seen a lot of them, but she really tailors the massage not only to your med problems, but to how I'm doing from one day to the next. I swear she has magic in her hands, because I come out walking better an energized after seeing her - even in this last serious bout I've been having. I'm a little concerned over your post about your tongue feeling thicker, though. Be careful with that, because it sounds like your weakness is maybe spreading? Watch for choking and breathing, and rest whenever you can!

Erin - Hi, baby! I hope I wasn't too stern on my last post. You know it's just cuz I loves ya, and don't want to see you be your own worst enemy! As for the situation with your dad, I think you're right but fighting the whole fam is tough - especially when you have health issues to deal with for yourself! Can you call a pow-wow and present them with some choices, such as put him in assisted living (they're wonderful, by the way - a way to keep their independence while being watched over - make sure your fam knows you're not talking about a nursing home), leave him where he is, but with a stipulation that other family memebers have to check on him by phone or in person on a REGULAR basis and help with his bills - if they can't pay they shouldn't have a say! (in my humble opinion); or leave things as they are and everyone takes a chance that it could turn out very badly. Maybe some literature on the assisted living, and some input from his doctor would help? I'm sorry you are in this position. It's such a hard thing to have to do when you don't have support from at least the majority of those involved. I wish you a lot of luck in dealing with it. Keep us informed!

Kristie - I so hope you are right and the pompe isn't a good fit. It would break my heart for you and your family! I hope you all get feeling better real soon with the virus - get as much rest as you possibly can, ok? And be sure to let me know when you have the test, and then when the results get back. You know I'll be thinking of you and praying for a good result! You're much too young and too sweet for any other outcome!

As for me - I went back into the big bad world and......

caught the FLU! First day back to work I ended up in the same room with an employee that was running a 102 fever and was "really sick" but came in for a seminar on our profit sharing account change! Sure enough, it got me. My trusty neti pot and some vicks vapo rub seem to have helped me get over it quickly though!

I'll be going to see my mom the first time since Xmas tomorrow with my daughter, Angie and granddaughter, Alexis. I can hardly wait! Then, Monday we are having a b-b-q for both Memorial Day and as a farewell to Angie and Alexis. They are moving to Minnesota for a while so my daughter can get back on her feet. She has people there with connections for a place to stay rent free while she gets back on her feet, and job connections, as well as someone to watch Lex no matter what kind of shift she has to work. It's actually her ex husband and his family - good thing they kept everything real friendly! And they all love Lex, so I'm good with it - sad to see them go even for a while though :( .

Gotta get this posted before I time out again! Talk to you all soon - Have a great week-end!

Hey Mary!
 

Lol.... Big High^ 5 to you Mary! I love talking too, so find it hard to make myself stop especially with my work. I'm an advisor so I love talking to my clients. =D Lol.. So am still hanging on with my conversations. Just can't bear to stop them... By the time I stop mouth's gone..

Thanks Becky!
 

Haha.. Such a sweet person you are, replying all of us!! And thanks so much for that long long post!

Yes, MG Is virtually non-existent here, there are people with MG but so far they've had to go overseas to get it diagnosed properly. Probably there are others with this, but hve not been diagnosd and have not been so lucky in their research. Just found someone who had to go through 4 crisis and few years before she got diagnosed. Diet and lifestyle?? Hmm... Less starch and more vegtables? Or it could be the sunny weather that we get here. Thanks so much for the luck! I need it!

whirlwind!
 

Congrats Whirlwind! The pool sounds like a great idea. I will definitely be great to just splash around and relax. Good on you! Enjoy yourself!

Welcome Pippi!
 

Hi Pippi! Welcome to this great forum! You're gonna love it here!

Thanks Connie and All/Exercise
 

In the few days I have been a member of this group I feel for the first time that I am getting some good suggestios/ideas from people that understand. I had been a Real Estate Appraiser until end of last year when I quit working as I cannot climb stairs and tire out very quickly when I do any sort of activity. Being at home, though, and being inactive is causing me concern over weight gain, muscle tone etc. I mentioned exercise to my Neuro at my last appointment and he said I was not ready. How can we keep muscle tone without hurting our MG?

Hey Pippi,

I sure understand what you mean about the weight gain & muscle tone. Do you think you could try something like yoga for beginners? I've been thinking about trying that myself. I've heard there are really good instructional DVD's so you can do it at home. I've been walking, but that might be too much for you. Hope this has helped.

Take care,
Pat

Hey Pippi!
 

I agree 100% with Erin here Pippi. Listen to your neuro; if he is telling you that you're not ready yet, you should want to wait. Frustrating as waiting is, when he gives you the green light you'll be able to get your muscle tone back fairly quickly. Keep mentioning it to him so he doesn't forget that you want to be able to do exercise and get his help on setting up a safe program for you.

If you are going to try to exercise anyway, I would suggest you get a treadmill and walk at home. When you get tired at all get off it.

Best of luck :)

Brian.

My "Check In update"
 

So,

I've been getting to the gym 3-4 times per week for the past 2 months now, everything is going well there. I get in various cardio and weight training to build stamina and muscle tone. I have also been easing into the swimming again although I sink instead of float now (I used to have enough fat to float ;) ). The gym work is really helping me; I was able to mow my lawn for the first time in almost two years yesterday. I had been paying the kid next door but while he liked getting paid he didn't like doing the work. It was nice to be able to do it for myself.

I've been to work on a graduated return - a month of 4 hour days; I'm in week two of that now. I'll be following that up with a month of 6 hour days and then 8's. I'm really liking the 4 hour days though... everybody should be able to work 4 hour days; wonder if I can get my doctor to sign off that I need to be on them permanent? :D

Still on 90mg x 3/day Mestinon, but it is only really needed for my swallowing now. My tongue still goes a little loopy and gives me the marble mouth, but only when I'm utterly exhausted and at the tail end of my last dose of Mestinon for the day. If neither is the case, I'm good.

Hope everyone else is doing well and improving :)

Pippi, I forgot to add although I'm sure you would have...to check with your doctor on the idea first! Pat

Good to hear Brian! Like I said before, you'll be eating that Tia food before too long!

Take care,
Pat

The swimming pool from h---!
 

Update:

Well had the swimming pool installed by a professional(so I thought) who does work as a sub contrator for the place I bought the pool. Well pool was up and running when he back filled pea stone against it in some spots 2 feet high...that is a no , no per pool warranty, instead of putting in a small retaining wall this is what he did., so that has to be removed., well Sunday I finally got in the pool, and the whole bottom ( it is an above ground pool) has large ruts, and creases so bad It is difficult to vacuum., also some areas where you can feel some thing very hard and somewhat sharp., so he has to take down the pool and re install it., obviously, there is a problem with this installer., as usual he said this is the first pool I have ever had problems like this........Well unfortunately before I knew this was going to happen I had contracted him to put on a deck by the pool and new porch roof., took a home equity loan for all of this, well lets say the roof was a Gable roof and there are issues there along with other issues., so he was very agreeable this morning when I showed him everything and admitted it was bad workmanship and felt his men had hurried . Well so now my yard a complete mess from the excavation and who knows now how long before it can be fixed it will have to wait till the pool is redone., what a mess the dog goes out and is covered in mud., my poor little sadie ( Golden retreiver) she is so out of sorts as her routine is ruined. Needless to say I am dragging., very tired and it was hot and humid all this past week so that didn't help and needless to say me being so upset., over all of this....but I am trying to rest when possible, but I certainly found out one thing I can not take the heat. I just certainly hope he reinstalls this pool accurately..... But thats the news for me right now., hopefully soon I can sit on my deck ( if it don't cave in lol) with a roof over me ( that doesn't leak lol) and go in a pool where my foot don't get stuck in a rut., or have the wall cave in and me float down the corn field (lol), I think that would be a #1 Aflac commercial....lol....Well how is everyone else doing? Take care....all of you, Nancy:eek::rolleyes::icon_frown::Scratch-Head::Crazy 2::laugh::ranting:

the things we go through :rolleyes: sorry it's turned out to be such an ordeal. luckily my hubby can do anything and i mean anything!!! we've put above ground pool up twice. it got bigg leak after 12yrs so we had no choice.once he and a pal had turn put in a water shut off in his house. the old one was stuck-they chopped off the valve,had lots of large barrels around -had a plan and all supplies right there for any complication. that was the bravest[or dumbest] thing they've done. but it worked it was brand new!oh what men can get into:confused:i was laughing today-my mom keeps complaining about a small leak under her car,husband finally saw it said it was antifreeze and she went to dealer,who said no leak[she has him check before she goes to repair so she sounds intelligent when she gets there.:confused:she believes hubby so she'll go where we go for anything he can't fix. hope you're feeling better!!

Hi ya'll (sound like Erin now!),

Pippi - really - don't try ANY exercising if the neuro nixed it for now. Remember, muscles have memory and bounce back quickly when you are able to exercise safely. What I do when it is nixed for me is just isometric - tighten then release the muscles just a couple of times each at different times and rotate - don't go through all the muscles in one sitting, ok? And stretching is just as important, so don't forget to stretch them out also. That'll keep them from turning to total mush without wearing you out.

Pat - Yoga was one suggested for me too, but I didn't get the chance to try it before I got really bad :( . I had some Pilates tapes that I tried, but they agravated my kneck even when I tried the modifications (I've had 3 neck surgeries, so it's REAL temperamental). Let me know how the Yoga tapes work - I'm good to go and really NEED to get back to something more than walking at this point.

Nancy and Xmas - love the stories! Sorry you're having so much trouble with that pool, Nancy, but your sense of humor about it is delightful! It must feel like the carrot dangled in the face though! What torture to be so close and yet so far.

Xmas, I have one of those hubby's too. My dad and brothers are also like that so l thought it was a gene thing for men until I met a gal whose husband couldn't even help her hang a little cafe curtain rod - he SUPER GLUED it!! What a goof!

Keep up the good humor everyone - laughter is the best medicine!

OK here's my update - I'm such an airhead sometimes.

I'm back to work - just in time for the Memorial day holiday. I knew I had my consult with the MDA doc on Tuesday the 26th, but in my confusion I thought of Tues as Monday (which of course I had off), so I was preparing for my appointment this morning! Noticed the date and thought -uh oh! I had even set up the back up tape at work with our Monday tape Tuesday, so you can see how messed up my internal calendar was.

I called to explain what happened and discovered I probably didn't want to see THAT particular doctor anyway! I was told that HE wouldn't see me since I missed my appointment so I'd have to be scheduled with someone else. Talk about egotistic!
Thing is, when I asked why they don't do reminder calls, I was told they do, normally, but since my appointment was the day after a holiday they didn't get me called on Friday - so they messed up due to the holiday just like I did - but he won't reschedule me for him????? ARGH! That's exactly the kind of doc I DON'T care to see anyway, and I think I'll tell them that!

Anyway - I'm doing so well I can't even believe it! Friday I spoke to my neuro's assistant about the antiviral success and to see if she thought I could postpone this MDA appointment and if she wanted to see me before hand anyway, as well as to let them know I was done with the Prednisone and when could we schedule my MRI.

She still wants me to see the MDA clinic to reconfirm the MG (again), and will see me after my MRI in 1 month. I'm not sure what the point of the MDA clinic is, really, but if she insists I will do it. I don't think she can argue much with the anti-viral success if I can ever get in to see her and discuss it, but I agree about the MRI - I do want one more done - just for peace of mind if nothing else. This TM should show on MRI too, but she said I don't need to come off the anti-viral before hand, so I don't know how that would show the inflammation if the meds are helping it. I may come off them for a little while before hand anyway, again for peace of mind! Not too long though, I don't like tanking!

We had our b-b-q for my girls going away. Had a total of sixteen people and I had a blast. I was actually able to get up at 5:30, make potatoe salad, clean some, take my shower, blow dry my hair, run around setting everything up, play hostess to everyone, clean up after, and not be completely wiped out! That's after making the 2 hour round trip drive to my mom's Saturday to take my daughters cats down there, and chatting up a storm while there!!

To think that just a couple of weeks ago I couldn't even get up long enough to make my own food! I love these anti virals as much as Erin loves her IVIG! I have worked almost a full 8 hrs both yesterday and today, and came home and worked in my hubby's office for a couple of hours too. I think I may need to back off just a little though, cuz I do feel a little weakness creaping in on me, so I can only get on here about once a week now.

I miss you all and being able to keep up with all the posts and new people! It's amazing how our group continues to grow! Welcome to everyone new. I hope to be able to get a schedule set that allows me a little more free time soon, but for now I need to get myself back to being able to "take care of business" (and earn my keep around here!).

Take care, everyone. I'll be back! No doubt with another LONG post. Thanks for putting up with me on these. :)

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!!:Head-Spin:

Becky,
Congratulations, I am delighted for you. I have learned so much from all your posts. You are an inspiration.
Stay well, be happy, God bless .
Christy

I just wanted to echo the thanks for all the inspiration I am getting from all the posts. I am new here, but am getting more acquainted as I go. God Bless each of you for your posts, as they help!
Simon

Hi Simon,

Welcome to the group! I've just recently found this group myself and it really is great. Hope you are feeling well.:)

Take care,
Pat

Hi Becky,

I am so happy you finally got the right diagnosis & treatment and are feeling so well! We are sure going to miss your posts every day. Take care and don't try to take on too much at once.

Hugs,
Pat

Hi Becky!
 

Thanks Pat. I'm having a blessed day today and believing for another tomorrow. I pray that we ALL have one tomorrow also!

PLEASE dont listen to the people at urgent cares! a steamy shower? a hot shower put me into crisis one time. extreme heat/ cold will make any MG problem worse. rest is best.

So happy my back is better ! It's like a breath of fresh air ! lol.... So, I have been weeding out closets, & getting after my yard, it's a jungle out there after all that rain !
I am so happy things have come together for you Becky, & thank you for sharing the information with all of us !
Mary

Hey Mary,

So happy to hear your back is better! When you finish with your closets do you want to come over and weed out mine? :D

Hugs,
Pat

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

Hi All

you go away for a for a week and the board fills up, and heaps of new people are around. Its good to see!

I had a great time at my Aunties, talked lots, went shopping and spent lots of time with her and her daughters just hanging out.

My mg played up a little, most frustrating!!!!!! I will catch up with all the posts over the next few days
Kate

update May 31
 

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.

Hey Brian!
 

Hi Maryec!
 

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.

Geeeez
 

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. :D

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

I'm sure you're not lazy!
 

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!

Hi Connie!
 

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

Hey Becky!
 

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:D

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