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Okie2

Distinguished member
Joined
Dec 21, 2010
Messages
259
Reason
PALS
Diagnosis
04/2010
Country
US
State
Oklahoma
City
Bartlesville
I wanted to start a lighter topic and see if anyone else has strange things going on. Brook sea posted about calcium in the ears of her pal. I had bad dizzy spells turning from right side to left side in bed. So dizzy I thought I would puke. I asked dr about. He said it was crystals in inner ear sliding across nerves. Official name is BPPV, can't spell but googled it and that is what it is. Dr said has to do with age and not ALS. Treatment is also really cool to you tube and watch. They lay you down and turn your head and body all kinds of ways. Dr described it as Trying to get the bb back in the hole like the games some of us had as kids. It just proves to me that i have rocks in my head. Anyway my first spell cleared up and then a month later it was when I moved from left to right, or looking down to one side. When this would happen I would say " Watch out landslide!". This to has stopped for now.

Also and this is almost to strange and embarrassing to mention, but here I go. I have developed bad body odor on just one side of my body, what? I have never really had a b.o. Problem. I worked outside and sweat my entire live and never had the smell I get now from doing almost nothing. ? Can you imagine the visit to the Dr office?

Dr. I have bad b.o. What is it? Dr. says I don"t smell anything. I say, You are on the wrong side! WTH?

I can shower and within hours I have b.o. Again it is not ALS related. Is this the fun we have just getting older?

Let me hear your fun stories and let's laugh a lot, it does me worlds of good!
 
I get dizzy spells like bed spins but it lasts 1 to 2 hours. I went for a year or so without any bouts but recently I've been getting them about once a week, less intensly than before. ENT said it's Meniere's Disease a couple years ago. Who knows. I wear a hearing aid in my left ear, hear fine in my right.

I used to live in Oklahoma City for a few years in the early 80's. Bartlesville is in East OK isn't it?
 
When I met my hubby ten years ago, he warned me of weird cold spells. He told me he had them for years and not to worry. When I saw him go through it, I couldn't believe it. It was usually when he was outside working...he loved to do yardwork, and build things, paint, fix things...etc... He would come in after working hard, usually take a shower, relax, eat...whatever and then go into this freeze where his teeth would chatter, shiver, and just couldn't get warm. I would pile blankets on him, rub his arms, back, .....put blankets in the dryer and cover him... It took him up to about 45 minutes to get warm again.
He hasn't had this difficulty since his diagnosis, but now I wonder if it was a sign of ALS coming on... something to do with toxins in his body (Veteran), or something weird about his body reacting. ?
 
Marta, Dizzy spells are common when you wear hearing aids. Something about sensory stim on the cilia in the bony labrynth
 
I have had the cold spells like that but they would only last a few minutes. They were very intense when it happened, shakes, teeth chattering, sick to the stomach cold, cold cold.
 
Hmm...maybe I shouldn't put it in so far then Susan. I'll try that. Thanks!

Okie, my feet and legs get cold but stay that way unless covered. Your cold spells sound pretty intense. Have you told your doctors about that?
 
Have not mentioned it, maybe I should. I have had them for about the last ten years or so. Have only had 1 since diagnosed. Yes Bartlesville is just north of Tulsa. Oklahoma green country.
Yes, my legs feel cold to touch but I don't feel cold. Daughter has me taking Cayenne tablets, and nurse has told me if I can eat hot peppers to do it, they are good for circulation. It does seem to help some. Maybe just in my mind, but isn't that half the battle to feeling better.
 
Okie, yes, attitude is a large percentage of the battle I think. :)

When I lived in OKC I always had red clay stains on my white socks! Red Buds are gorgeous!
 
I had the cold thing too...one time I was so cold I tried to warm up by getting in the shower...bad decision...I couldn't 'feel' how hot the water was because all I could think about was how 'cold' inside I was and couldn't get warm. Luckily I noticed my skin getting red before I got any serious burns from the extremely hot water.

I also have had cold hands and feet my whole life...not just cold...if it is 60 degrees outside and I am out there for more than 5 min. my hands and feet turn blue and purple. Truly....I have to get out of the cold or it gets to the point I can't even move my hands anymore..I go into a kind of hypothermia. Anyway..all has always been linked to "Rayneauds Phenonemon".

And then there is the strange imbalances of different chemicals in my body. One month I am told I am severely anemic, the next I seem to be on the higher end and not even close to having a problem. The strangest is the extreme drop in Potassium from my body for apparently no reason. No one could explain how I had a potassium reading of 1.76...let alone...how I survived and functioned with this level. I should have died.

Shaky vision is a good one too. Like, someone is shaking the world in front of me up and down like an etch a sketch :) I think diseases, whatever they may be throw off our bodies into weird directions just to cope...well that is how I deal with all the weirdness anyway :)
 
OK, here goes my strange thing, when I wake up in the morning I feel as though I am vibrating on the insides, especially upper body and head. It is just plain weird, but after I am up for 1/2 hour or so it goes away....:)
 
Di, my husband has those same sensations. He's had them for years and tells me the only thing that calms them is a libation or two. He said he feels like electricity is buzzing throughout his body, making it vibrate.
 
wow CJ, here I tought I was the only one, I have mentioned it to docs and they don't say anything just give me a weird look as to say..."oookkaaayyy". It is a wierd feeling, like a short circut but no electrical feeling, just profuse steady vibrations on the inside.
 
Thanks for posts about the cold thang! I wondered after he was diagnosed if it had a relationship.....still don't know of course, but with others experiencing it, could be? It is totally weird!
 
Okie2, I can relate about the BO! You'll find a thread on deoderants here too. My problem is feeling overheated and it's not the big M. My regular neuro says mabe it's some sort of autonomic thing and he could prescribe medication. I declined. My liver is already twitchy after the Rilutek, I've even had to give up booze!
 
On the cold subject... its sort of funny...
On many occasions when I take my PALS nightime wool socks off to lotion feet and put on day time socks, one foot will be ice cold and the other will be sweaty. And its not always the same foot. They switch. Odd
 
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