New Member - Suspected ALS - Cold Skin?

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yankeebrad

New member
Joined
Oct 24, 2006
Messages
4
Reason
PALS
Country
US
State
NE
City
Lincoln
Hello All,

I have been a frequent visitor as of late and have been overwhelmed by the information and support that this site offers. You have all given me a huge portion of support and information and I can not begin to thank you all. I was diagnosed by the Mayo clinic in late Sept with suspected ALS. Two things keeping me from a positive ALS diagnosed are my EMG was inconclusive and I have a protein level of 167 in my spinal fluid. There is an outside chance that I may have CIDP so I am taking IVIG infusions until I go back to the Mayo in December. I can only hope and pray that the infusions begin to work. In the meantime I am sure that I will have several questions. However, I lost my Mother to ALS in 1991 so I have much too good of an idea of how the drill goes. On to my question. My right leg is currently where most of my symptoms reside. The atrophy is so bad I am barely able to move my it. I am still able to walk as I can lock my knee back and swing my leg forward. However, my problem is that my leg from about the middle of my thigh down to my calf is almost always ice cold to the touch. Is this common? I know that my circulation is poor in this leg, but why wouldn't my foot be cold as well? Any insight into this would be greatly appreciated.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome brad and good question. Most people do complain of cold extremities and not the parts in between. Maybe someone else has had this. Hopefully someone has an answer. AL.
 

kedevlin23

Active member
Joined
Aug 18, 2009
Messages
37
Reason
Loved one DX
Country
US
State
PA
City
My Oasis
My Mom was just asking me about this tonight about my Dad. That he's cold to the touch, but that he's not cold himself.
Told her to ask about it at the next ALS clinic they attend. I've not had any success finding anything on this issue.
 

Blubear

Senior member
Joined
Oct 24, 2009
Messages
941
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Wa.
City
Puyallup
Hi kedevlin23, I have no idea about what your dad is going through, sorry I wish I could be more help. But, to be of any help at all, I would tell you to go back to the beginning of the general discussions thread and on the top left hand side there is a button to start a new thread. I would hit that button and start this as a new subject and that way you will get more answers.
Hugs, Blu
 
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