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cyberhart

New member
Joined
Mar 26, 2007
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PALS
Country
AU
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queensland
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brisbane
hi my name is steve ive had servere faciculations for 14 mths now all over my body was told by nuro that it is bfs but i have atropy in thighs and my fingers look like they have been in water but no weakness is this als or is there something else that could be responcible
 

liz

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Joined
Nov 9, 2006
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Diagnosis
11/2006
Country
US
State
NY
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Albany
Hi Steve -

I don't know what you may have but it sounds like it is time for a second opinion. If you can, seek an exam from a specialist in ALS/motor neuron diseases.

Liz
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
hey Steve
I'm not sure what BFS is but your doc is leaning towards that apparently.
There are many diseases that look like some of the symptoms of ALS, but self-diagnosing is the worse thing someone can try. Leave it to the pros, that's why they get paid the big bucks! If you're not sure about what the doc says, then like Liz said, get a second opinion.

Good luck!

Edited to add:
I'm not saying to leave your condition in the hands of someoone else, you have to become an expert in what is happening to your body. But I am saying to not discount what the experts tell you.
 

CindyM

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My doctor says that an informed patient is easier to treat as we become partners in our care. That said, if you find that the research is making you nuts then take a break for awhile Cindy
 

liz

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Joined
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Messages
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Reason
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Diagnosis
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Hey Annmarie -

I just noticed your from Palmyra. Are you a native? I was born and raised in Lancaster, and still have family in and around Lebanon. Small world....

Liz
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
annmarie said:
I am not sure, but I asked that question about atrophy of the fingers, and I thought someone said that the tips of the fingers do not have muscle, and do not show atrophy like soaking them in water. I could be wrong, but let the experts chime in on this one, they know better, but take it from the biggest worrier around.. RELAX.. Annmarie
That is called atrophy the fingers move from the tendons I have the samae look to my fingers pat
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Just a comment about hand musculature: although the muscles that bend and stretch the fingers are not located in the hand itself but in the forearm (and operate the fingers by means of long tendons) there are many small muscles that lie within the hand (the Intrinsic muscles of the hand).

The mound of muscles at the base of the thumb for example, helps to operate the thumb. The muscular pad on the little finger side of the palm assists with the little finger's function. Other small muscles allow us to spread the fingers apart or pull them together. These "intrinsic" muscles are important for fine motor control.

The loss (atrophy) of these muscles changes the appearance of the hand.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Finger atrophy

Thanks Landscape,

I cannot move my baby finger on my right hand to the left - toward my hand at all. I can sometimes now move it to the right but not always. It is curved down always and I cannot straighten it. The mussle in the hand under is extremely weak and if you put change in that hand it would fall on the floor unless I move my arm. I cannot write checks with it with a regular pet without a great deal of effort. I can use a gell pen better because I do not have to put pressure on the pen to make it work. This all makes better sense to me now. I never asked the Doctors to explain how it works. After 2 neuros that thought I might have a pinched nerve and even got an EMG from one, I asked if I might have MS or ALS. They said no. Two years later when I could not move the baby finger at all I went to a hand surgeon who said nothing broken and he sent me to a neruo. This neuro was quite upset with the other two and said I had ALS/MND on Oct 31 2006 and sent me to U of M = ALS clinic. They are trying to rule out Multifocal Motor Neuropathy (or rule it in) and I just started my second round of IVIG as I seem to have some improvement. I go back in August 2006. According to EMG and nerve conduction tests, I also have lower neuron issues in 3 of 4 limbs. No indication of upper neuron at this point and very slow progression. So I keep reading here and find it very helpful. I am on LTD and actually retired after after 36 + years. I am very lucky.

Today though, I got pretty upset because I cannot fill out the paper work for SS disability. I typed a bunch of it out using a voice recognition program (DNS) but some of it is a lot of check marks and fill in specific blanks. I will have to get my daughter or husband to help me and it's the first time I have felt really bad. So I came here. Thanks. I understand better. God Bless. Peg
 

CindyM

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3,543
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Country
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New England
City
Anytown
Hi Peg. It must be frustrating to lose the use of your hands. My legs don't always cooperate but I got over missing that a few months ago. Not sure if I'd adjust as easy to losing the use of my hands, though. Already I'm very frustrated on days when I drop things. I can see where it would be discouraging to have to ask for help writing! Cindy
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
It seems to me that we all somehow manage to cope with it as it comes. My hands are going first and I'm finding ways to make do. I can't figure out how Pat gets by without her voice but she does. Cindy is working around her wobbly legs. And don't get me started about the caregivers - is there a more resourceful bunch of people in the world?

I think we should all give ourselves a pat on the back, if we can still reach. Or get somebody else to give us a pat of the back.

I was just really happy this morning that it's finally warm enough that I didn't need to wear socks. That's one aggravation I won't have to put up with again until October. I wonder if I'll still be able put socks on by myself next fall. Oh well, I'll wait till then to worry about it.

Liz
 

CindyM

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New England
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You are right,Liz. We could each of us be in a worse spot. Better to be greatful for what we still have/can do! Cindy
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Wow Cindy and Liz you're such wonderful people

My respect to you both.

I don't know if I would be able to handle a situation like yours, just looking at my husband makes me so sad, after being a very independent person all his life, always so sure of himself to look at him in a bed, with his fingers all curled up, not being able to wash his teeth, or to eat by himself,or talk, after having been such a healthy person who had never been sick, makes my heart hurt for him and all the people going through this terrible sickness that I think nobody deserves.

Hugs to everyone PALS, CALS And their families.

Paty
Husband's Caregiver DX 10/17/05
Baja California, Mexico
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
caregivers' heartache

i just read what paty had to say about how it hurt her to have to watch her husband become so helpless after being so healthy all of his life. i have the same situation as paty and most likely many other of the caregivers in this forum.

my husband was diagnosed in jan. of this year, and not only can he barely walk from room to room, but he is also losing the use of his hands. he can barely hold a fork or pencil anymore and this is so frustrating to him.

when i watch him struggle to eat, to walk, to take a shower or brush his teeth, my heart actually hurts - i can feel the pain as if it were me not being able to do those things. caregivers that are spouses and who love their mates with als, often wish it were them that had the disease instead because we hurt so badly for our partners.

this is a monster disease and i am thankful for every single day that the good lord blesses us with.

with hugs to everyone here,

jackiemax
 

CindyM

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Thanks Paty, you're pretty special yourself. I think it takes a special person to take care of someone who is as ill as Jorge. But as the old song goes, nobody ever promised us a rose garden life! Your friend, Cindy
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Thanks Jackie and Cindy

Thank you both Jackie and Cindy for your friendship and also to all the wonderful people I've come to appreciate in the forums, I don't know what I would have done if I hadn't found this place.

Wonderful gentlemen like our dear friend Al, Mt. Pockets, Mike, Quadbliss. and other ladies like Liz, Lunarruna (Beth), Beebe, Boots, and so many more.

Friends forever.

Paty
Husband's Caregiver Dx 10-17-05
Baja California, Mexico
 
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