Diagnosed in April

[LaurieG]

Hi Everyone,
I finally figured out how to post on here. I was diagnosed in early April, and told I have a year. Tools are coming along, but insurance is slow to approve.
My braces finally got approved, and I pick them up Thursday. Neck brace wasn’t ordered. Ugh. Have been on Riluzole since April, and just started Radicava (oral). Praying they both bring results. ALS appeared to slow for a while, but now seems to be advancing again. I’m pretty sure this is affecting my eyes in the way of vertigo, and colored lettering.

 

[Mary2]

Hi Lauri, I am sorry to welcome you to the Forum. The people here are knowledgeable and emotionally supportive. My husband was diagnosed April 2021 but had symptoms for 5 years. I haven't seen too much about people with ALS being told how long they would live other than that many ALS patients pass at the 5 to 7 year mark. Maybe a moderator will comment more on this. I believe a second opinion is generally recommended, usually at an ALS clinic if you can get to one. Again, sorry that you have this diagnosis.

 

[Firefighter58]

Hi Laurie ,I wish you were not here but we are all in the same boat, this disease sucks but so little we can do about it. I have been in this fight for about 8 years but I still look forward to tomorrow, I am confined to a wheelchair now and I can't speak but so be it. I feel fine other than that, the people here are wonderful and have a great amount of knowledge about ALS, look forward to hearing more about your journey .
Al

 

[Nikki J]

Hi Laurie
sorry you had to join us but welcome.
as Mary said you should have been diagnosed by an ALS specialist and also had a second opinion from one. It looks like you are close to Wash U so hope you are going there

none of us have an expiration date stamped on the bottom of our foot so even the greatest expert is only guessing. A year is on the short end of life expectancies but obviously your onset site and condition at presentation factor in. Still I wouldn’t take it as an absolute especially if your breathing isn’t severely compromised.

 

[LaurieG]

Hi Nikki. I was diagnosed by two neurologists, one being at Wash U. Didn’t mean to sound depressed I’m not. Strong faith in God takes care of that. It does become frustrating at times.

 

[KevinM]

Laurie, I’m so very sorry about your diagnosis. As others said, neurologists might have some general idea of our progression, but it usually takes visits several months apart to get a better sense of things. Even then they are often wrong. At the time of my diagnosis I was told that I had a fast progression, but more than three years later I am still high functioning.

Mary2, this might not be the appropriate thread to ask, but it does pertain somewhat to Laurie’s post. I’m wondering how your husband had symptoms for five years before seeking a diagnosis. If you don’t mind me asking, what symptoms did he have for so long?

 

[lisa g]

Laurie, sorry to welcome you here. As for the doctor telling you that you have a year isn't likely. You'll see alot of us here have exceeded more than a year. Glad you started Riluzole and Radicava ORS. I hope it works for you.

 

[KimT]

Laurie,
If your neck is weak that can affect your eyes and spacial perception. Years ago I was misdiagnosed with Meniere's disease and they finally figured out it was cervicogenic vertigo caused by a neck injury.
I'm glad you found the forum but sorry you have to be here.
Don't allow them to assign you a time. As Kevin says, sometimes they are wrong.

 

[lgelb]

Hi fellow Laurie, welcome while sorry you are here.

You may want to try more than one cervical collar -- there are foam ones, foam + plastic, plastic + metal, etc. Most PALS will not tolerate every kind. They have different properties. I always advise starting with a medium density foam collar, such as you can find on Amazon, etc., and height does matter. That gives you a benchmark to see what you might like and not about more expensive and structured braces.

When you get a power wheelchair, you will want to make sure it has a more-than-standard head rest if your neck is already weak, e.g. take a look at the Savant. It is much more of a hassle to get the right one after the fact.