here4her

Thanks for your kind post.

Hi

My concern is she's giving herself basically a death sentence--and MANY of the myopathies and such are treatable. Would her doc approve a trial of IVIG? One person here was diagnosed with ALS and turned out to be something treatable with IVIG. If it's ALS--it's als...but with the level of progression you describe--I'd think a neuro would pick it up just by exam at this point. How is her CK level? Does it show muscle loss? Believe me I KNOW EMGs SUCK. But, she could be missing out on trials and things that could help her---unless her doc will give an official DX of ALS for medicare--she's losing benefits there as well.

Hey Really do see if you can convince your wife to be seen by an ALS specialist. I know the NCV (electric shock) part is very painful--I'll never have another--but perhaps she can just say "no" to that portion? Your wife's progression just doesn't sound typical of ALS--which could be a GOOD thing for her! Many other things are treatable.

Glad to meet you but I hope for your sakes that she doesnt have it. I havent read your posts yet but will check them out. Sherry

Hiyas! Glad to hear progression isn't moving too fast yet for your wife.

i was teasin here4her. i am rarely upset about anything especially on the jokes thread. please relax. we all understand and r glad u found us. we need a laugh even if it reminds us we r old! lol

No worries from me! It was the non joke posts that have gotten long. I can sometimes get through them, but I know a lot of others senior members can't and/or won't. And that's too bad, in a way, cuz they have a ton of information/advice to contribute, but get tired out reading. Many of us suffer from unrelenting fatigue. How come you don't have PM privileges? You can activate by way of user cp on tool bar. Then you can have private messages and not have it all on visitor page. I frankly don't have ill feelings towards anyone... Except maybe stubborn DIHALS, from time to time! Ha!

Wow! I'm impressed your PALS is still working. And long hours at that! Good for her. I quit at DX and we traveled. A lot. Another 2 trips booked. Nevada in a week and France in April! I'm gonna keep going as long as I possibly can. I've been on 6.5 continents... The .5 was seeing Antarctica but weather nixed landing. So close and yet so far!

You are Not in trouble! Happy to have you, and your great sense of humour. That's for sure. Hope you did not misinterpret my comment - absolutely no disrespect intended. BTW, when replying to a visitor message, post it to the sender's profile so that it is received. Otherwise the sender has to check on your profile page. Will your wife be joining us? She sounds amazing too.

O.K., thanks, Ottawa girl. I will keep that in mind. I seem to be getting in a bit of trouble here lately. I'll keep trying to improve. I may have yo back off, I don't know. Looking at some of the others, I didn't really know what was proper.

Just a suggestion - your posts are way too long. Most people won't read them. It's hard for PALS to participate if we can't get through to the crux of your comment. Please keep in mind, many of us are chronically fatigued and also some of our meds cause brain fog. People will lose interest quickly. Just saying...

Barbie,

Thanks for your post. This is the place to learn and lean, I've been doing both. I appreciate everyone putting up with me. I may have to back off a bit, my wife is beginning to think I am becoming obsessed with this forum.......
I can't help checking everyday if I have time. It's like my new email. I've been blabbing over on the "come for tea" thread, guess you've read some of that. Sometimes, it helps to let a few things out.

Thank you kiara,

I am keeping my fingers crossed for you, hoping for something treatable.....you are so young and still have kids to raise, etc. Stay positive and hold out for the best, until you know for sure.

I have not been to Milano, but it is now on my list. I have not seen anything about Italy that I did not like, so far. We flew in and out of Rome on this last trip, but we didn't have time to sightsee....what a shame! Now, I have to go back to see the Coliseum and all of the cool things there. Venice is very cool and famous, but my dream vacation to Italy would be to spend some time in the Tuscany, Florence area, and do the wine tour, bikes or no bikes.

Hang tough,

Steve

I forget to say that I read your posts and I think your wife is so luky to have by her side a so precious and caring hubby.

Hi, I hope to have something like CFS but there are some symptoms like hyperriflexia, stiffness, musles wasting that make me think it's something worse. I'm still waiting in this Limbo land, not easy at all.
I live near Milano but last summer I went on holidays in Puglia and I agree here in Italy there are a lot of beautiful place to visit. thank you for your message and greetings