chills and ALS

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BOSE

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Does anyone experience chills? My fiance gets the chills so bad he starts to shiver. I will give him an electric blanket to help warm him then he will get hot and sometimes even break out in a sweat. At first I thought he was getting the flu or something but I take his temp and it is normal. Can anyone tell me if this goes along with all the other things of ALS? Thank you for any input/advice you can give me.
 

BethU

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Hi, Bose ... I have experienced waking up in the night with shivering, and I also would crank up the electric blanket till it went away, but I don't think it was really a question of being cold. This was one of those mysterious symptoms that happened for a couple months, then stopped and has never returned.

I've also awakened in the night with goose bumps running up and down my body. Very strange sensation. That too has gone away.
 

joelc

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I am sure, for some PALS, that this is a symptom of ALS. I know exactly what you are talking about and have the same symptoms. It is very agravating. Thankfully it does not happen all the time, but much to offen for my liking! I do find myself living with an electric blanket though.
 

Patsy

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I have read research articles, some time back, that the autonomic nervous system (that controls the thermoregulations) can be affected in ALS some times. I get this too !
 

Al

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From my knees down my feet and legs are like ice blocks most nights. I sit with slippers and a blanket most of the time. A cool breeze or draft seems to suck the warmth out of me more than it did before. Probably ALS related.

AL.
 

Marcia707

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Beth U- My sister, who is 57 yrs.old, has been experiencing bulbar ALS symptoms for approx. 1 year. Started with slurred speech has progressed to not being able to speak at all, trouble swallowing, choking drooling and feels like her face is paralized on one side. She has no other symptoms although she is cold to the point of shivering quite often. When your symptoms started how fast did they progress. She has been to one, so called, ALS specialist in Lexington, KY who did nothing but tell her to go home and get her affairs in order. Since then she won't go to any Drs. She is very stubborn! Her daughters and I beg her to go to another Dr. to no avail.
 

BethU

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Hi, Marcia ... My speech problems started in March, 06, so I am going on three years. In the first year, speech therapy actually helped my speech a lot ... I was almost back to normal, when I had to have a small surgery, and when I woke up from that, my speech was really affected, and has gotten progressively worse.

Your sister sounds a lot like me ... same symptom progression (and same stubborness!). I know how she feels; I've had a neuro actually make jokes about ALS to me (he diagnosed me with MG and told me if I had ALS I'd "be six feet under by now." Ha, ha, really funny.) It's only been in the last six months that it has progressed beyond the bulbar symptoms, so that's two years of bulbar only.

I'd urge your sister to see a neuro again ... I don't blame her for not wanting to, and with a progressive disease like this, it may feel as if there's no point. But, there ARE things they can do to slow it down, and also to make her a lot more comfortable. I'm sure she wouldn't mind a little more energy, and advice on swallowing, and things to help her breathe better. Above all, tell her she's got to keep her weight up ... she should do whatever it takes to keep from losing weight. This will slow it down.

Is there a university clinic near you? I'm from Youngstown originally and should know, but am not sure where Hamilton is. Ohio has some top-notch university clinics.

Tell her one stubborn old lady on the ALS forum is begging her to see another neuro, and get a full evaluation and some help managing all this.

Hang in there ...
 
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Marcia707

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Beth U. - We will try again to get her to go to another neuro. She has plenty of energy right now, in fact, she can run circles around all of us. Arms and legs are still in great shape. From the neck up - no good. She is loosing weight. She lives in Southeastern KY. and there aren't any big clinics around anywhere. I live 20 miles north of Cincinnati and have tried to get her to come here to see a neuro but she won't come here either. We will keep trying. Thanks for your help.
 

vmd

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Marcia:

Is there not also a danger that she could develop aspiration pneumonia with her choking problems? This could be very dangerous.
 

Mr. Bill

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My feet are cold all the time. It doesn't seem to help to wear a couple of pair of socks or even slippers. My hands get very cold also but they are a little easier to keep warm.

I use a heating blanket at night and keep it on high. That seems to get me warm enough to sleep.

The only time I can really get warm is when I get in the Jacuzzi....then when I get out I feel really weak and limp. I can handle that better than ice blocks for feet and hands.

Bill
 
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