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HoldingOnToLove

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IL
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Quincy
My husband was diagnosed with ALS last October. He has lost 60 lbs. since the original diagnosis despite taking in well over 2000 calories a day. We are trying to push it to 4000 because he can't afford to loose any more weight. Also, while I have been told that people with ALS suffer from the cold, because of an inability to shiver, he is hot an sweating while the temperature in the house registers between 53 and 65 degrees. I wear a coat in the house, as do my children and any visitors. He wears T-shirts and shorts or light sweat pants. Metabolism and Thyroid tests came back normal. If anyone out there has any ideas, I would appreciate it.
 

westjlittle

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Joined
Dec 12, 2006
Messages
52
Reason
PALS
Diagnosis
October 2006
Country
US
State
CO
City
Denver
My 'hot' flashes were due to High blood pressure. I found that my blood pressure ranged from normal to very bad over the course of the day. Ranging from 125/80 to 163/120. We figured this out by monitoring my blood pressure several times a day over a week with a machine.

I assume that is being checked.

Jim
 

Gina

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Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Holdingontolove,welcome to the forum and i am so sorry that your husband has this horrible disease.My husband lost a lot of weight as well at least 80 lbs.He was not overweight he was just about all muscle a very strong man.He also would be so warm and want to wear short sleeve shirt and pajama bottoms all the time,while i was so cold i wore socks and sweaters to keep warm.In the summer the heat didnt seem to bother him he loved to be in the sun.In the winter his hands would get very weak when he was trying to work on his car or something outside.I asked the nurse about that and i cant remember her exact words so ill have to translate with my own...she said his body was not able to regulate body temp. anymore...She said it was fine for him to wear what he was wearing and not to worry and that he would tell me if he was cold.Which he hardly ever was.When his weight became a real issue the nutritionist recommended ensure+ and he would drink one always in the middle of the night and he seemed to stabilize his weight with those extra calories.......I hope that this helps you a bit and i am sure others will also have suggestions for you!...Gina
 

cukita99

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Messages
361
Reason
PALS
Country
US
State
tx
City
el paso
i am a 53yr. old n have been diagnosed. with ALS 2yrs ago after fighting with symptoms 4 5yrs. i dont speak, walk or have strnghth in my hands. i 2 am always very hot. i have terrible times especially in the middle of the night. my caretaker has 2 wear a coat but i need 2b confortable so i make her turn off the heater. u just have 2 hang in there n keep the house cool 4 ur husband. enjoy the time u have with him i would give anything 4 my husband 2 b by my side but he chose 2 leave 4 some one else.
 

CindyM

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Sep 17, 2006
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Learn about ALS
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New England
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Hi cukitka99. So sorry your husband left you! I hope it was long before DX, or else he will have to live with his decision for a long time. Regarding feeling hot all the time, I understand completely. LOl, I keep taking my temperature to see if I have a fevor. Don't understand why some feel cold while others sweat all the time. Another mystery in a long line of them, I guess.
 

Bobby C

Active member
Joined
Dec 31, 2007
Messages
40
Reason
PALS
Diagnosis
12/2007
Country
US
State
Texas
City
Austin
What a strange malady. I was diagnosed with PMA. When the neuro did the EMG and Nerve Conductive Study - repeats of earlier ones - he had to put hot towels on my feet because he said they felt like icycles. Now they are always cold to the touch. I cannot touch my wife in bed with them because they are so cold. I do not notice it unless I touch some other part of my body with them or touch them with my fingers.
 

pmbenb83

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Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
My husband sweats buckets whenever he does any physical activity, but wants the house kept at a comfortable temp of 70. He likes to wear short sleeves and khaki shorts around the house.... like he's in the Bahamas, I guess. His feet are also like ice, and I can relate to the not touching my legs in bed at night. That is quite a startle in the middle of the night. :)

I wonder if it is a circulatory problem. Since the muscle is missing, would it cause the blood flow to be different? Another question I've been thinking of too.... if the heart is a muscle, why doesn't this have any affect on it? From what I have read, the heart is spared... thank God.

Cukita99 ~ Sorry to hear about your illness and situation. You must be a very strong lady! Lots of hugs to you! It is still very shocking to hear that someone would not be supportive in a time like this! What goes around comes around, I always say. Karma bites in a big way too.... I hope he can handle that. :)

Take care.
Pam B in Va
 
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