Intro

[James82]

Hello everyone!

Was diagnosed with ALS at the end of February this year (2020) after a misdiagnosis with MMN and CIDP.

Noticed something was wrong when I couldn't climb from the top of a ladder onto a roof safely back in Jan. 2018. Thought it was due to cold (stiffness) and getting older (late 40s). Things progressed later that year with the first onset of foot-drop, by the end of the year, which is where the initial misdiagnosis was done. 2019 was further progression, moved into both legs and started affecting hands, arms, etc.

Currently at the point where I am still able to get around with a walker, but the hands and arms are starting to get significantly constrained in the range of motion.

Served in the military for 10 years (5 year Air Force, 5 year Army, all active duty). Seems to be some relation there for me (no FALS that we are aware of).

Researching treatments and more information on ALS is what brought me here. Specifically interested in NurOwn or MSC-NTF treatments. Still reading as much as possible, as I am sure many of us are.

 

[Nikki J]

Sorry you have to join us

please stay safe and don’t fall.

i hope the VA benefits are helping you. your risk of ALS is about twice that of a non vets so yes connected which as I am sure you know the VA acknowledges

we have threads on nurown if you look but as of right now the trial gave the last patient dose last week. There will be 12 weeks of follow up and then they do the data analysis. Hopefully it is good news and it flies through the FDA. Right now we are all waiting!

 

[Clearwater AL]

"Hi" James. Thanks for the intro.

If you haven't already I suggest you contact and join the PVA.
Paralyzed Veterans of America. They now specialize in ALS veterans.
They cut through with the VA faster than other veteran organizations.

 

[Clearwater AL]

James, this is optional. Maybe to add to your intro where and who confirmed
your diagnosis of ALS.

It helps the extremely knowledgeable ALS members who are also familiar
with Florida to maybe direct you to the best facilities and qualified ALS
Neurologists.

I'm sure it was frustrating to have two misdiagnosis.

I guess I need to say "Welcome to the Forum". That word troubles me when
it may imply "Welcome to ALS".

Anyway... hope to hear more from you.

 

[lgelb]

Welcome, James, and thank you for your service. No question is too big or small.

Best,
Laurie

 

[KarenNWendyn]

Sorry to have to welcome you James. This forum is a wonderful resource.

 

[Statius@]

Let me emphasize the value of getting accepted (via PVA) into the VA system. They cover everything (equipment, medication, treatment by specialists) at no charge--you're considered 100% service-related disabled. And I found with a minimum of red tape and competently (I suppose that could vary by which VA you're connected with). Well worth it.

Ed

 

[Dee Dee 0617]

is it with a heavy heart I say welcome

 

[Kristina1]

Welcome. I'm so sorry to hear about your diagnosis.

 

[Fusia]

Sorry to have to welcome you here, James. But, you will find so many knowledgeable, kind people here to help and provide support (and to tell a good joke or story once in a while).

 

[swalker]

Sorry to welcome you here, but welcome nonetheless!

As so many have said before me, it is a great place full of amazingly helpful folks.

Steve

 

[Tkthiede]

I’m sorry to see you here but there are very knowledgeable and kind folks here to answer your questions. As was said before, thank you for your service and all your sacrifice.
Tammy

 

[KimT]

Welcome and thank you for your service.

I'm very familiar with your neck of the woods. I have friends who Winter in Stuart and I live in DB Shores, FL. My cousin is an administrator at the VA hospital in West Palm Beach area and she's a retired Lt.Col./Army.

Al and others know a lot about navigating VA.

Lots of good info through search.

 

[nona]

Sorry to be welcoming you here, James. You are not alone on this journey.

 

[lisa g]

Hi James,
Welcome although sorry to see you here. You and I are neighbors, I live on the border of Port St. Lucie and Fort Pierce.