[ras1256]

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!

[ras1256]

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!

[ConnieS]

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..

Originally Posted by maryec

Connie, Talking is a big drainer on me also, I have to excuse my self after a while, when I get calls from my talker friends, or mom. They just wear me out, my speach & energy still goes after a awhile. I know they get dissappointed, but they keep calling so they must understand !! LOL.........
Mary

[ConnieS]

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!

Originally Posted by ras1256

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!

[ConnieS]

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!

Originally Posted by whirlwind123

Hi everyone.,
I have finally tapered off the prednisone., so I was feeling a little tired from coming off of it, but I am feeling so much better without the side effects of the prednisone. My lymph nodes are a little swollen but I know they will go down eventually. We are in the process of getting an above ground swimming pool., with my husbands health problems., it will be good exercise for him he loves to swim. I am not a swimmer but I like to splash around. So it should be relaxing. I know I have to watch the heat and sun. So, I am actually feeling pretty good, when I am tired I rest., the vision is a little blurred gets really doubled at night, in the evening., but I feel very fortunate, especially after I read what all of you are going thru., right now it seems my symptoms are mild. Still waiting to get into the good neuro.,and I am not going back to the bad neuro, but my GP is taking good care of me. We are supposed to have a nice week here in Ohio., so I am hoping so, I feel so much better when it is clear and sunny out., we have some beautiful scenery from our back so it is nice to just sit and look out and relax. So that is what is going on with me.

[ConnieS]

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

[Pippi]

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?

[Pat 110]

Originally Posted by Pippi

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

[erinhermes]

I know what you mean about exercise and MG, but if your neuro says that you are not up to it just try and be patient. I KNOW how hard that is - trust me - and I know you do not want your muscles to waste away, but you really need to listen to your dr right now. I argued with mine and thought I was "stronger" than I was - I wasn't. It wasn't fun!

I am not trying to be a downer @ all.....I just know that MG isn't something you can "work through"......give it a little more time. Soon you'll get the "green light" and work out - it will all be worth it in the end!

Hang in there!
Big hugs!
Erin

Originally Posted by Pippi

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?

[Brennan068]

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.

Originally Posted by Pippi

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?