Think I belong here...?

[Hi Skyehy]

I feel kind of at home with this group. ALS didn't seem to fit cuz I've been on a slowly progressive decline for 13-15 years now. I was in my early 20's when I started limping on my r. side. I'm 39 and have been scooter bound for 7 years. I wish I had done more when I could. But the progression was so insidious. I didn't know I would be almost completely disabled so young. My arms/hands still work, thank God. But are getting weaker. I notice I cry at anything.

I'm seeing a "electro diagnostic" neuro on Wed... First neuro in 3 years. Hopefully I'll get some answers. It's weird because I can only barely move my toes now. Can't walk at all but not completely paralyzed. It's hard being undiagnosed so long. I just want to know what I'm up against. I'm such a tough case to diagnose my last neuro refused to see me again!

Praying for answers. Thanks for listening.

Kate

 

[vzandt]

Welcome Kate. Hope you like your new family. Us.

 

[oscar1]

Kate my lord you have been thru so much . I am struggling with weakness and twitching for 3.5 years and that seems like hell so I dont know how you have coped.I hope your neuro appointment gives you an answer soon. PM me anytime
margaret

 

[Hi Skyehy]

Only by the grace of God Margaret! The leg spasms every night since 04 are the hardest...and insomnia all these years. The fascics don't really bother me. But I'm alone most the time and that's hard. I'm not supposed to drive so I'm housebound most the time. It gets lonely.

Thanks for the welcome Vzandt!

 

[jamiem]

Oh Kate, welcome to the forum. I am so sorry you have dealt with this for years and I admire your courage. My first symptoms came in Nov 2011 and remain bulbar (difficulty speaking and swallowing). Somedays I think I am so worn down and then realize I am a "newbie".

 

[Tokahfang]

If UMN-something-weirds don't belong here, I'd have to leave. Come take a seat!

 

[Hi Skyehy]

Yes, Jamiem, I also feel worn down most the time. I understand. Im definately sitting, Becky. But I don't really understand PLS. Does it spread from legs to arms, etc? Or stay in one place?

 

[old dog]

I started having symptoms I was unable to control in 2009. Prior to that, my back and leg problems were intermittent and I thought they were due to pinched nerves, bone spurs, etc. My right leg then started feeling like a peg leg and speech was impaired. At first, my arms and hands weren't affected, but now I'm losing fine motor skills. Can still type and write but slower all the time. Have trouble picking up little things. Am afraid of cutting my hand off if I try to slice a large onion.

I'm so sorry you are having to deal with this, especially when you are so young.

 

[momap53]

Welcome, Kate! Be sure to check out our archives.

 

[golf4kev]

Hi Kate,
Many great people here. Hang in there. You are in the right place.

 

[Hi Skyehy]

Thanks, everyone. I'll let y'all know what this new neuro thinks. If anything. Nice to have people around who understand!