After many tests...ALS

[Tomswife]

My husband had a symptom of slurred speech in march 2022. He is 69. Then the coughing and spitting when drinking soon after. We are in NJ. After many tests (xray. MRI. EMG, blood. BARRIUM SWALLOW) he was given a preliminary diagnosis of ALS. Now in September he has weakness in his legs and arms, but is able to walk slowly.
We were referred to New York Presbyterian, and in thr first meeting, the neurologist confirmed bulbar ONSET ALS. . We will be meeting with the ALS clinic team later this week.
This is a helpful forum. But we are so new to this. I dont even understand some of the posts. We will continue learning.

 

[lgelb]

A sad welcome, TW. Take time to process, and let us know how we can help. No question is too big or small.

Best,
Laurie

 

[Firefighter58]

TW May I welcome you to this very trustworthy and informative als site that no one ever wanted to be a part of , but here we are. There are some very knowledgeable people here and I am not one of them but those that are are more than willing to share their knowledge. Feel free to ask.
Al

 

[Nikki J]

Sorry you are here but welcome.

if you have not yet found it the resource section may be helpful

Resources

www.alsforums.com

if you are finding terms and acronyms confusing look at that thread. There is also a thread on preparing for first clinic visits.

of course feel free to ask too.

you have probably already explored the subforums but to explain we have besides other special interest forums a CALS section for care partners to talk among themselves. Anyone can read of course but it is a place where CALS can vent and share their challenges. PALS read there at their own risk. Similarly we have a PALS section for persons with ALS. Everywhere else the two groups meet and share as on this Newly diagnosed section which was the perfect place to start. Anytime you want input from everybody on a question or concern general discussion is a good place

we would be happy to welcome your husband if he cares to set up an account too.

 

[Mana]

I am also sorry to welcome you here. My husband was diagnosed last January and I’ve found both information and comfort in this community. We are still absorbing our new reality with the help of excellent medical care at Duke ALS Clinic and the open hearts of the PALS and CALS on this forum.
Wishing you the best,
Mana

 

[KimT]

TW, I'm sorry your husband was diagnosed but there is so much information and support here. Feel free to ask anything. We were all new once and except for Nikki and others from families with ALS (FALS) we all had to ask questions and learn.

 

[affected]

Really sorry to welcome you here. Everything about this disease is new to us when we start. Do check those resources but don't try to take in more than you are ready for. We'll walk with you.

 

[Tomswife]

Thank you to everyone who responded to my first post. Today we go to New York Presbyterian to meet with the team. This is the multi discipline meeting, and with the Doctor who will be our primary.
Good news yesterday about AMX0035.
Kathy

 

[John445]

Sorry you are here, great group here with such good information. John

 

[Bleue]

So sorry to hear of your news. This is a great place to express yourself, chat, and to just search for anything that comes to mind. This is an amazing vault of questions and answers on nearly anything you may want to know, now and in the future. Stay strong!