New to the club

[Leanne2016]

Hi,

I have recemntly been told that I probably have PLS, although the neurologist is still ordering tests to learn more.

I've always been active, most recently running half marathons. The last one I ran was in August... and now I need a walker or wheelchair to get around. I run to relieve stress - oh, the irony.

It's mostly left leg and arm, but my core is weak also. My least favorite symptom are intense muscle spasms in my left leg which keep me awake. I now take Baclofen, which is helping.

Anyway, I'm getting an EMG on Thursday - no idea what will be next. I asked for a test for Lyme Disease, but neurologist is convinced that's not it.

Other than that, I'm struggling emotionally(lots of ugly crying), and haven't really accepted that this is my new life. It's quite a shock, yes?

Hope this isn't too long. I'll be reading posts to try to figure some things out.

Leanne

 

[Atsugi]

Sorry to see you here, Leanne. There is a lot of crying involved, that's for sure.

Look around, and ask all you want. We're very friendly here.

 

[scaredwifetx]

Sorry that you have to join our club. Don't worry, there are a lot of ugly tears in this mix. You will find some comfort here and this forum is so very helpful with any questions or concerns.

 

[ShiftKicker]

Welcome, Leanne. I wish you all the best for your EMG.

Fiona

 

[Nuts]

Leanne, I'm so sorry that you have had to seek us out, but you will receive a lot of information and support here PLS is confirmed. Keep us posted on your EMG.
Becky

 

[Gembead]

Hi Leanne and welcome

 

[pittsburghgal]

Welcome, Leanne. You will find a great deal of information and support here. Don't hesitate to ask any questions or just vent.

Sharon

 

[Leanne2016]

Thank you all for your replies!

I had the EMG today and it wasn't nearly as bad as I was anticipating. I now am waiting for my neurologist to study the data and tell me what it all means.

Leanne

 

[KateEmerson]

Hoping for the best for you Leanne.

 

[Leanne2016]

So, it seems I may be in the wrong club. After my EMG, my neurologist referred me to another neurologist in San Raphael (I recently moved out of my 2nd floor condo in Mountain View and in with my parents, 2 hours north.). Anyway, I was given a new, worse diagnosis of ALS.

My new neurologist wants to do another EMG to be extra sure, and do some kind of baseline test of my breathing.

Not a happy day...

 

[lgelb]

Very sorry to hear your news, Leanne. I would imagine your new neuro would not have said ALS unless s/he was sure of it. You will be in good company, as that is what 95% of our diagnosed members are dealing with, and it sounds like you have supportive parents. Give yourself time to take it in and be with them and the others you care about.

Best,
Laurie

 

[affected]

So sorry Leanne, we will do all we can to support you xx

 

[WendyWooG]

Sorry to hear that Leanne, welcome here we will all support you as much as we can.
Wendy x

 

[soonerwife]

Ugh! Sorry to hear that Leanne!

 

[Nuts]

So sorry Leanne. We will be here for you.
Becky