Hello Everybody,

[DakotaDave]

Long time reader of your boards and it's time to come out of hiding. My wife's story started in Oct 2011 when she tripped and fell face first. Trip to the ER to be checked out she was told all was well go home and rest. A month later she started complaining of not being able to move her shoulders. That started a parade of doctors, physical therapists, Cat scans, MRIs, and finally to the EMG/NVS. At that point she was referred to a neurologist that initially told her it was probably a reaction to the statin drug she was taking, stop it and come back in 60 days. She did that with no improvement, at that point he told her it was probably ALS, come back in 3 months. We requested and received a referral for a second opinion at the University of Colorado medical center, more tests were run and she was told it was clear she had ALS. That was Feb of 2013. To date she has lost total movement of her arms and has started to lose some ability in her legs. She has had no loss of speech or swallowing to date.

When I first saw ?ALS written on the doctors notes I thought good maybe we can work on getting her on the road to improvement. Then I researched ALS and realized what we had to look forward too. Have to admit this wasn't a club I was looking to join but the vow was for better or worse, sickness or health, and I will support her as well as I can.

I want to thank you all for the courage I have read in your posts giving me an idea of whats ahead.

 

[MaxEidswick]

Hi, Dave --

>I want to thank you all for the courage I have read in your posts giving me an idea of whats ahead.


the whole thing sucks. what we say is: iiwii = It Is What It Is. Not very comforting, but true ...

>She has had no loss of speech or swallowing to date.

great! you may want to look into voice banking, for me it's too late :-(

 

[affected]

Dave, welcome, though I hate new people joining us, I'm sorry to hear of your wife's diagnosis.

Still, you've come to the best place there is for support and somewhere to unravel.

It's amazing when we look back to realise how long the process can take for a diagnosis. I know at the time we were just waiting always for the next appointment with a new specialist a month or 2 down the track. I would be convinced the next doc would find something and we would be on our way up again ...

You will find this place even more helpful as you start to talk to us rather than just reading here. Good on you for saying hi.

 

[JimInVA]

Greetings, Dave!

Some of our earliest indicators may have been the tripping and falling when a toe (or foot of the shoe) would unexpectedly catch the carpet and take my wife down. Those were hard falls and the pain would continue for weeks. So sorry to meet you under these circumstances, but glad for the acquaintance nonetheless!

Jim

 

[Santa joe]

Hi Dave, welcome to the club no one wants to belong to. This is the best place for you to be. I would come here and read everyones post for about a year before I joined. Joining this forum has been a blessing to me. I don't know what I would do without all of my "family" here, both Pals and CALS. The most important information you will learn - You are NOT alone. Everyone will be here for you.

Debbie

 

[SMP51]

Dave I lurked a long time too, and steered clear of thread I found "difficult", reading mostly technical/medical/practicle type in threads gleaning all the information I could.
but now the emotional support I find here is invaluable. I get sympathy from my friends and family but true empathy here from this family

 

[SMP51]

, ......at that point he told her it was probably ALS, come back in 3 months. ........

I see this over and over here. seems a lot of folk's docs told them als before being certain, or were quite blunt. Our experience was no one wanted to say "it" to us...or perhaps we just weren't listening.
but it seemed they always tag a gentle "not sure" "doesn't seem quite like als" or some such disclaimer.
It wasn't till I noticed it on the check out paper you had the office girl that I realized he had truly been diagnosed ALS.
now I hear those same disclaimers being passed on to our friends, not sure if he is doing that for them or him....guess it doesn't really matter