gooseberry

Hello I am wondering if my symptoms suggest ALS as I have not been able to see a neuro yet. It all started with a pressure like sensation in my neck with tingling up both sides of my jaw line. If I wore a high collared shirt, necklace, scarf (even loosely) it would trigger this pressure and tingling and was like I could not wear any of it. They checked thyroid and found a cyst on ultrasound but thyroid blood work came back fine. The tingling started to go down my back, into my arms, and at times into my legs for 4 months. Now starting a couple weeks ago, I woke up with sore fatigued muscles.

Hey girl - time for some PMing ???

Steph - Posted an update - help! well, a cyber hug will do.... wanted your input if you feel up to it.
I'm glad we are friends... xoxo Nancy

Hi! This is Sheila (sibling ALS). Thank you for welcoming me to the Forum. You asked me which doctor I was seeing at the Univ. of So. Florida. All I know is that I will be seeing a female doctor. I think that her first name is Lisa. We live in Auburndale. How can I get my e-mail address to you? Do they let us send them in a message?

Hi Gooseberry, thanks for accepting my invite.

Hey Gooseberry! how are you doing? we are so close--do you ever get up to Orlando area? I live to the west of O-town in Lake county. we should make a plan to meet one day for lunch!

Thinking of you Steph ... Hope this finds you hanging on and hanging in there. (what silly sayings)
I continue to read your posts... I admire your activity here on the forum - I'm still pretty reticent ... even shy. Thanks for keeping in touch.
Hugs, Nancy

How are you? I sent a short PM.

Good news! Sooo happy things have taken a much needed turn for the better. The 'button peg' sounds fantastic - compared with other experience. If you had started with a button peg - would the procedure have been the same? and just as uncomplicated??

I know nothing about pegs but will have to learn. It seems that breathing problems go hand in hand with eating troubles and weight loss. My Toby is down to 147 (over 50 pounds lost) so it's a matter of time. I've tried about everything and between his high metabolism now and this feeling of fullness that is experienced constantly - eating is a battle.

Speaking of sleep - I'm going to take a nap now.

Sorry I didnt get a chance to email you today. He ended up with a button peg. Less pain, no snagging of shirts on tubing, all in all a very good result. Trying to make some lemonade out of lemons! Did it as an outpatient procedure with twilight sleep so we were in and out in 3 hrs. It was a really good experience. Finally.....and no stitches to be removed...even better! Here is my email [email protected] How are you guys doing? Hope things are okay for the moment? Breathing deep here...may get some sleep for a change

Lordy - how is the feeding tube fiasco going? Are you holding - and hubby??? I think of light surrounding you and warming and comforting you... You are in my heart and on my mind.

hugs are always welcome!

oh yes-
update:
the ALS clinic director left a 'small' electric wheelchair for Toby to try. It comes apart in four pieces for easy transfer but I could not pick up 3 of the pieces so not sure how that will work out. always some hitch in the gitalong.... lol

NeedCourage
OMG Stephie.... I was just thinking of you!
special big squishy hugs, dear woman.
do you want my email? we can share private thoughts....
love
nan

ps - was so distressed to read your latest I posted my response on my own page!
duh.
My grey cells are turning WHITE.
: )) (my double chin...hehehehe)

We are going through such similar shit! omg.
Tomorrow someone from the ALSA is bringing 3 different types of wheelchairs to our house to try out from their loaner closet.
Amazing - are we twins????
Sending big big hugs and a nice soft shoulder to you Goose... : ))