Confused and going insane!

[Al]

Hi Ellisa. I did notice my wrist shrinking around the time of diagnosis back in 03. That was one of the things I pointed out to my doc at the time. Had to move my watch up a notch. He said well you've just retired so you probably aren't getting as much exercise. Little did he know then. Don't throw those loose shoes out yet. Give it about a couple of years and you'll get the foot swelling and they will fit like a glove again. LOL. AL.

 

[ellisa]

Al,
To bad nothing else is getting smaller (lol). I'm glad to know that I was not imagining things. Is there in reason for why this happens? For about week now have been having burning sensation in fingers, feet and forearms is this common? Right thumb start twitching last night more annoying than painful. Sorry for all the questions but no one seems to what to discuss these symptoms with me Assume I am being a hypochondriac but they for get 5 months ago I could take care of myself now I need help almost to wipe my butt (LOL). Now dose that sound like a hypocontriac I tell them and they just laugh. Thank again for your quick responses I am new here so it is nice to now there are people actually reading my crazy outburst, I am so glad I found this site it has been a great blessing.
Ellisa

 

[Al]

Hi again. The getting smaller could be just plain old atrophy but without a diagnosis , who knows? The burning sensation is a bit different. I myself never had this but some here have reported it but not very often. Could be something else going on. AL.

 

[liz]

For Ellisa and Al

Ellisa -

My feet shrunk a half size within the last six months and coincidentally this is when I started experiencing symptoms (weakness) in my feet/lower legs.

Al -

What causes this foot swelling that I keep reading about?


Liz

 

[Al]

Hi Liz. From what I read the muscles squeeze blood back up to the heart. When you lose muscle due to atrophy you don't exercise as much and the less muscle can't pump as much. Also you tend to hold a bit more water as you sit more. Circulation can be cut off or be lessened by the angle we sit in chairs. It is a vicious cycle. Ain't life grand once again. AL.

 

[ellisa]

Well I am glad to know I am not losing my mind. Thanks Liz and Al!
I am going next week to see another doctor to see what she has to say about what is going on with. Maybe she can give me some answers. Just a little advice should I bring previous test results or let her run all new ones.

Ellisa

 

[TBear]

Hi Ellisa:
You may have heard this before, but ALS is usually diagnosed by eliminating everything else (at least up here in the frosty, currently wet, north it is). So a lot of testing is involved to make sure that everything else is ruled out before you get the word. We even had a second opinion do some of the same tests to confirm the diagnosis. I know that it's tough waiting, but, who knows you might be luckier than others of us here! In the mean time it might be worth investigating the locations and opportunities in your community for ALS treatment. ( clinics, OT's and PT's as well as community health care stuff)... just in case!
Good Luck

CHeers

T.

 

[liz]

BOTH!

Liz

 

[ellisa]

Liz and T.Bear,

I am just so tired of being stuck with needles (can you believe when I was a child nurses would draw straws to see who would give me my monthly allergy shots I would run around office, hide in closets just not to get a shot) now it is like second nature I sometimes think I do not even feel them. T.Bear just a little overwhelming right now. Koo-toes to this site and the people I have only started posting this week and I already feel at ease with allowing total strangers to read and respond to my feelings and concerns about what I am experiencing.


THANK YALL SO MUCH,
ELLISA

 

[Al]

Hi Ellisa. If you go for a second opinion and take the other guys test results for the blood and MRI and spinal tap that would be ok. I would ask for new EMG and NVC tests. I have seen different operators of the equipment get different results so if the new doc uses old information he'll probably give you the same opinion. I could do that for you. I'd insist on new tests even though they are not fun. Just my opinion. AL.

 

[CindyM]

Gee, Liz. I was taking Grampa Al's advice about the Merlot but now I see I need to do more research! I'll let you know how the cheap American whiskey works out! Take care and have a good day. BTW, are you doing anything special this weekend? They said at first it was supposed to rain but now they say only partly cloudy, at least here in New England. ALbany weather gets a little hairier sometimes, though, am I right?

 

[liz]

Hi Cindy

My 11 year old son is in his 6th grade play tonight - I'm really looking forward to it.

 

[ellisa]

Hey Al every opinion counts and that's what I need right now.

Funny thing happened to me this morning. Wanted to get a bit of fresh air so my mom put my wheelchair (Can still walk but not very far, I use it when I have to go places that require a great deal of walking, easier also on my husband and mother they do not have to worry about me falling plus it is alot faster) on the back porch so I could enjoy this beautiful weather. It is so relaxing and peaceful to to watch the red birds in the back yard along with the squirrel's scampering around for acorns. The weather right now is beautiful about 65 degrees (cool), Sunny not a cloud in the sky with a pleasant breeze. When I decided to go back inside I could not seem to lift myself out of the chair. It was like my legs did not want to work. Had to call my mom to come and help me out of chair which was a real task because not only could I not get my legs to work but barely had the strength to wrap my arms around my moms neck to get up. Finally after a few times at trying we managed to get me out of the chair. We both were in stitches about the whole situation. My Mom said "to bad we were not recording the whole thing because we could have won $10,000 on Americas Funniest Videos". I have to admit it was pretty hilarious but scared the h*ll out of me. Do these types of things happen with ALS or not? If so why? I know I am full of questions put trying to gather as much info as possible so I can better prepare myself about what to ask 2nd MD. next week. Thank You

Ellisa

 

[Al]

Yes my dear as they say "stuff happens" Some days are good days and others are not so good. Some days my legs and hands are not too bad and others I have trouble holding a spoon let alone walking. Just another fun thing about this miserable excuse for a disease. Better than that I was at a party a while back and couldn't get off the toilet and of course had locked the door. Now that would have been funny seeing me twisting and turning on the toilet trying to get something to push up on to get up. LOL. 65 is cool? My god woman we won't see 65 again for at least 6 months. Count your blessings. Although when it's 100 and humid and only 80 here it's not bad. Just a matter of perception I guess. Have a good weekend. Ours is cloudy rainy and about 40. AL.

 

[liz]

Elissa

I think you are ready for a new thread title. How 'bout "Baffled and Just a Little Nuts"?

Liz