Question about limb onset als

[awieleba]

Hi RObin,

I feel your pain. I have been soooo upset lately. In just 2 weeks things seem so much worse and I am scared. I was wondering about limb onset also. I have muscle's moving in my calfs and feet. Infact, I saw the little pulses in my foot this morning while laying in bed and I feel those pulse in my calfs all day. more than before. *the only thing I dont understand is that while my left calf is the worst, my whole body including arms and back and legs are weak. I have hard time even shopping and holding up a shirt or walking. I started with alot of arthritis pain, then weak thighs, then twitching, then thinning calfs and feet with hands. I just dont see what else this could be. I have an appt with rheumy today.
**has anyone with als started with arthritis-like pain all over? OH and I have a hard time breathing to boot.
I am thinking about you..........sorry to come on hear not cheer you up like everyone else. I just needed to express how upset I am.

Your family photos are great!
I just figured out how to post some on mine. They are a little old because I could not get the ones on my camera to format for the site, just the ones that I scanned.

bless you,

april..........I am not staying strong at all!

 

[happy]

I know April, I think your and my symptoms are so similar. It's so frustrating isn't it? I mean life debilitating in fact. I know that the emg I am going to get in a couple of weeks will finally put this to rest either way. And dont you have a muscle biopsy results coming? We will know soon. Right now, I go in and out of hysteria. I wish i could be strong like so many of the people here, but for now I am vasilating daily, it's a living hell. I wish you the best too, sweetie...my prayers are with you. We will overcome no matter what happens.

Robin

 

[happy]

You and your family are BEAUTIFUL! Oh my gosh, those kids are adorable. Thanks for sharing I love seeing who I am typing to.

 

[awieleba]

Thanks Robin,

I do wish that I could be strong like the wonderful people on here also. It is sooo hard for me. I go back and forth. I feel strong somedays and very scared the next. The hardest thing for me is my children, see there little faces and they are so overdependent on me. Even sometimes when I am getting close to new people, I kinda pull away and think "whats the point"? Kinda morbid, huh?

Well, thanks for the comment about my family, I am soooo blessed to have all of them! It did cheer me up putting up the photos, I was impressed that I figured it out. I still cant figure out how to put my stored digital photos on there? I had to use scanner and I wanted to post current photos of the kids.

We will get through it becasue we dont have choice about it. I am just having a down few days and then I will go back to myself again and live in the moment. I do feel that this a test of my inner strength.

bless you,

april

 

[happy]

Cystal, my nerologist and his team will be doing the emg. He told me to wear a bathing suit that they will be doing the entire body. He is the saramento als dr basically. He is the one who does support groups for families here in sac he also advocates for equipment for those who cannot afford medical care and the things they might need to make life eaiser. I was really surprised to learn of all those in this area that are suffering with als . We have an annual als walk and everything. Just goes to show you how unaware of things we can or at "I " can be until it effects me. For that I am sorry.