NeuroTalk Support Groups - "Check In" Thread

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Hey sweetheart! Now I'm gonna do some "mama henning" myself - you have been really busy! I am so happy you feel so great, but don't overdo it! We are obviously both type A people and nurturers and that can be a grea thing, but it can also be a very bad thing.....take care of YOU!:hug:

I can't even imagine a 40+ hour week - not yet! I will soon though!

Big, big hugs!
Erin:D

Quote:

Originally Posted by ras1256 (Post 520562)

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

Trust me Erin,
I'm being very careful this time! I have NO desire to go back to what was going on. One of the guys at work asked me the other day if I'm taking "happy pills" or what, cuz I'm always smiling! I told him when you come through what I have and get such a wonderful resolution, it puts all of life into perspective. Life is a reason to smile!

I know you know that feeling too!

Becky

Hey hon! I knw exactly what you are talking about! It is amazing how b/4 the MG I would let the "little" things get to me. Now I realize it just isn't worth it! LIfe is too precious to not enjoy it!

My family makes fun of me cuz' I'm almost always in a great mood - of course I'm in a GREAT mood - I'm alove and kicking! That's all it takes for me now! I wake up every morning and thank God that I am here - I do the same @ night!

I am so happy for you!
Big hugs!
Erin:D

Quote:

Originally Posted by ras1256 (Post 521086)

Just thought I'd use our check in thread to say I'm heading bush for a while:yahoo:

I'm assuming this is a very Australian saying.:rolleyes: I'm going with one of my younger cousins to the wheatbelt, which is east of where I live. We are going ancestor hunting, which will mean roaming through cemetries and visiting old homesteads, hopefully dropping in to see some long lost relatives we've never met.......hope everyone is doing ok, and I will see you all in a week or so:Wave-Hello:kate

Quote:

Originally Posted by redtail (Post 530331)

Have a great time and don't overdo it!! Hope it is cool there! It's over 100 in Texas today!! Thank God for AC! Have fun!!!!!

Yep its cool alright, about 14c/57f, and raining glorious rain, which we reallllllllly neeeed.

Phew, I feel for you, our summer just gone was quite warm, we usually reach temps of about 37c/100f. One summer a few years ago, we had a week over 38C, I was fit and healthy then and was working outside, now I flake on the lounge.

Hi everyone, so sorry for missing out on so much! Couldn't reply after the last post as went into sort of a crisis and was put on oxygen for close to two weeks. It was soooo scary, the first time I found myself being unable to breathe and gasping for air, even though I had breathing tubes attached. The sound I made then while gasping for air still freaks me out. :eek:

After more than a month in the hospital, am back in Singapore now, and readjusting to everything here again. The doctors there put me on a trial of mestinon, after I tested positive for a few segments in the Tensilon test, but the mestinon didn't help much so they took me off that after a few days. Now they're suspecting MND or ALS, which sounds so much scarier than MG. Did 3 emgs there, my first showed some damage in a few areas, my second (done 2-3 wks after the first) showed more damages and in more areas, and the neuro was exceptionally concerned as based on that EMG, he could diagnose me with MND. He then asked me to do a third one, which was more optimistic then the second emg, though worse off than the first.

Now they're monitoring me for 6 mths, after which I'll do the emg again to see if the results are the same or if the symptoms have progressed. Am not really thinking much about what MND or ALS entails, just doing my best to get better. Haven't really heard about MND or ALS until the docs there told me about it. Geez. That pretty much sums up the past month. Am just so happy to be out of the hospital and off the breathing tubes/oxygen mask. :p

Have missed all of you, how's everyone doing??? :D

connie it sounds so scary to be in a foriegn country and sick. are you from the far east or just temporiarly there? do you think the medical system is better there or worse? is it govt run or hmo type insur? i'm not planning to go anywhere but is interesting to learn new things! some things i've seen on tv suggest you need cash to get treated in some countries in far east-truth or fiction?:confused: thanks! hope you're feeling better!

Welcome back Connie and hope things go better for you! You deserve better. You have had a battle.
Hugs,
Simon

Hi Connie,

It's so nice hearing from you. I am not at all familiar with the other diseases you mentioned, but are they treating you for one or both of them now? After spending a month in the hospital I'm sure it feels so good to be home again. I hope you get some answers soon. Get lots of rest and keep us posted when you feel up to it. Take care.;)

Hugs,
Pat