Change of diagnosis

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Flyby

Active member
Joined
Jul 2, 2012
Messages
40
Reason
PALS
Diagnosis
10/2012
Country
CA
State
British Columbia
City
Nanaimo
Well folks, a year ago they finally gave me a diagnosis of atypical NMD and assured me I didn't have ALS. Two weeks ago, this all changed. The diagnosis is now ALS. It wasn't a h:smile::smile:uge surprise as I am deteriorating quickly. Still there is a big difference between thinking you might have and being told that you do. The only good thing about this is that my neurologist has left town and I willl now be followed by the experts in Vancouver. I will now have that "team" behind me instead of playing guess and only having the forums to get info from. The forums have been a great help and I am truly grateful for the information that all the others have posted on line for newbies like me to read. (Trying to put a smile here but it isn't going in. The important thing though is that no matter what the diagnosis I will live my life to the fullest possible with the help of my dear husband and CAL Don. Even if it will be shorter and more of a challenge, I will live each day to the fullest and anyone can remind me of that when I get feeling the blues. Mdy best to each and every one of us with this challenge ahead!
 
Even when we think we know... knowing it is very hard!

I've found loads of support here. And friends. You will too.
 
Well at least you have a final answer. We are all in this together and it sounds like you have found a good medical team. One day at a time.
Holly
 
Flyby, sorry your fears were realized... but now that you know, you can plan accordingly... A we all say here, welcome to the club no one wants to be in.
 
I'm so sorry Flyby.
 
Welcome Flyby. So sorry that you've joined our club.
 
I am so happy for you that you have a wonderful CALS in your hubby! Welcome!
 
Good luck to you, thanks for your sharing.
 
My diagnosis changed as well. I got my diagnosis of ALS 2 weeks ago. I went for prequel for neck surgery for herniated cervical discs, and the neurosurgeon walked me down the hall to a neurologist. First fasciculations during the neuro exam. EMG and nerve conduction and blood tests couple of days later. Only now starting to deal with it and plan.
 
Welcome! We learn, laugh and çry togerther.
 
Fly, sorry about your diagnoses. I have neuro muscular disease, among other issues. My neuro said he cannot promise that it won't change in a few years. Uuug! You are the first person that I have seen, on this site, to go from NMD to MND.

I wish you the best on your journey. May God bless you.
 
:smile::smile:Thanks for the support folks. Hey Ottawa girl I lived there for 18 yrs till we moved to the Island in 2000. It's a great place. Yes the diagnosis can change unfortunately as the symptoms become more visible. I too am starting to plan all of the legal and end of life issues that have become more critical now. My kids are coming from Ontario for Christmas so once we have talked to them it will be time to get the paperwork sorted. Cheers folks and don't let the 3 little letters get in the way of the Holidays. Peg
 
When I saw the subject of your post I got a twinge of hope that I'd read about a diagnosis changing from ALS to something other than ALS. I'm sorry to hear its the other way around, but your attitude is admirable and you sound like a strong, positive person. Wishing you continued strength and peace.
 
Maybe this is a question for wright , but can mitochondrial myopathy change or evolve into als? I never thought of that until I read this post?
 
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