Husband newly diagnosed

[msjswife]

and here I am. Ive been trolling these boards hoping that maybe I'd never need to officially register. Well, we have a second opinion from a very respected Neuro at MGH in Boston. 41 yo Husband had weakness in hand starting in April. Went from Carpal Tunnel, to possible pinched nerve, to OMG, what? (ALS) Anyway, just wanted to check in and say "Hi."

 

[HelenL]

msjswife, sorry to hear that you're on this journey, praying that it goes back to something benign...

MGH is great, they should have some good info for you. Has your husband had an EMG yet?

Hope you can find time to go around Boston a bit, you should go to Charlestown Navy Yard to see the USS Constitution and over to Fanuil Hall/Quincy Market if you can.

 

[msjswife]

Hello. Ive been trolling on here for a while hoping I'd never need to officially join. But here I am....41 yo husband had hand weakness in April and went the Carpal Tunnel, possible pinched nerve, and then OMG WHAT?/ALS diagnosed. First was June and second was just last week by a prominent neuro at MGH in Boston, MA.

So far, he just has some right hand weakness and decrease in dexterity, and of course, the twitching. Emg also showed issues with right hand and some in right leg. He hasn't felt weakness in his leg yet, but does have some stiffness.

Still can't believe he is only 41 and now.....this. He seems so young, although I know there are others out there.

This is an amazing forum. So much information and so many caring people.

 

[notgivnup]

Welcome, again so sorry for your Husbands diagnosed, Yes you will be at home here with loving and truley caring people with lots of imformation to help you on your journey.

 

[msjswife]

Hello,

Thanks for your reply. Yes, he has had an EMG. It showed issues with right hand and some on his right leg. So far , he just has someright hand weakness and slight decrease in dexterity. And he twitches. We were in Boston just for the appt (and a vacation.) We are from there, but now live in TX. The difference in medical care between here and there was astonishing.

 

[HelenL]

Yes, it makes me glad that I live in an area where there are so many major hospitals and universities....

Is he taking any Vit D? Or Co-Q-10? I think the Vit D slowed most of my twitching down, still have a little (I never had that much though). Where did you used to live in Mass? I'm halfway between Boston and Worcester, next to Framingham.

Helen

 

[Miss]

msjswife, I am so sorry. Just know that there are so many people here that will bend over backwards to support you.

 

[catcaniac]

msjswife, welcome to the forums. I wish that we were meeting another way but it looks like you have become a member of the club that no one wants to be in. The forum is a great help and you should visit frequently as I am sure you will have many questions and vents to come in dealing with the new diagnosis. Don't be afraid to discuss any issues on here as most have encountered the things you and your husband will be dealing with and know how difficult it is just hearing the sound of the word, ALS.

 

[llwlpn]

Hi and welcome. I'm sorry for your husband's diagnosis. (((Hugs)))

 

[Bhappy]

Welcome to the forum family! I'm sorry to hear about your husband's diagnosis. As others have said, no one wants to be here. Yet you'll find an amazing amount of support and caring among the members. Again, welcome!

 

[notme]

HI

Sorry you need to be here, but there are some great people. Also, you'll want to contact the ALSA in your area. They can be a source of great support.

While it sucks he was diagnosed, it sounds like early days. You'll have time to gradually start accumulating the things you'll need down the road.

Hope you find all the help and support you need here. He will, too, if he decides to join.

 

[Georgia Peach]

Hi
Sorry you have joined this group but I've found better advice here than any doctor that we see. This is a hard journey that you both are starting but this forum in one of the best things you can do for information.

What we've found is that we can barely keep up with the disease. If there is anything I can tell you is to be proactive. Request the equipment before you need it. Changes happen too fast in this progression. Is your husband a veteran?

 

[susanf]

Welcome, you are at the right site. The information here is an asset. Plus the people are warm and caring. Mine stated with slurred speech but I did have carpel tunnel, or at least thought it was.
Get with ALSA they are a great help with getting the ball rolling.

 

[msjswife]

Hello all,

Thanks for the replies. I cannot believe how supportive everyone is on here.

No, my husband is not a veteran. Luckliy, he has worked for a large corporation for a long time and they are extremely supportive so far.

Are any of you involved in any clinical trials?

 

[HelenL]

Yes, I'm in the Dex trial at MGH in Charlestown... they're also recruiting for the other trial that looks really promising, but I'm already in this one. One month and counting!