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Tingling Upon Wake


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#1 flutterbye_xo

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Posted 04 October 2012 - 07:25 AM

I was wondering if anyone ever experiences slight tingling in legs and/or arms right when they get out of bed. This has been a new symptom for me and I'm not sure if it's related to narcolepsy. I've always been the dummy that reads and sits with my legs all folded up and had sleepy limbs. I know neurological tingling can be indicative of other serious problems (Stroke or Diabetic Neuropathy- I know I don't have either) and am just hoping it might be a narco thing.

#2 Megssosleepy

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Posted 04 October 2012 - 07:49 AM

I was wondering if anyone ever experiences slight tingling in legs and/or arms right when they get out of bed. This has been a new symptom for me and I'm not sure if it's related to narcolepsy. I've always been the dummy that reads and sits with my legs all folded up and had sleepy limbs. I know neurological tingling can be indicative of other serious problems (Stroke or Diabetic Neuropathy- I know I don't have either) and am just hoping it might be a narco thing.


My feet go numb all the time... while driving or sitting at my desk... Pins and needles sometimes as well. I am not sure if its related to N tho? Thought maybe the meds?

#3 DeathRabbit

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Posted 04 October 2012 - 10:28 AM

My feet go numb all the time... while driving or sitting at my desk... Pins and needles sometimes as well. I am not sure if its related to N tho? Thought maybe the meds?


That's interesting. I have had the same stuff for years. It's not a recognized symptom of N though. That's why the sleep doc has me getting another MRI to make sure it's not some sort of sneaky MS.MS can cause narcolepsy if there's a lesion in the right spot.

#4 Megssosleepy

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Posted 04 October 2012 - 11:32 AM

That's interesting. I have had the same stuff for years. It's not a recognized symptom of N though. That's why the sleep doc has me getting another MRI to make sure it's not some sort of sneaky MS.MS can cause narcolepsy if there's a lesion in the right spot.


Do you also have trouble walking down the stairs like you legs get really shaky and weak? I feel like Ive lost all my muscle... I was thinking it had to do with not eating enough... numb feet is a sign of MS? I guess I have heard of MS but don't really know what it is... I know it can come and go, so one week you could be in a wheel chair and the next walking around... is that true?

Now I do get tingles in my toes when my sciatic nerve in my back is wacky. That hasn't happen since getting out of the restaurant industry tho. This is something very different from pinch nerve feeling.

#5 DeathRabbit

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Posted 04 October 2012 - 11:48 AM

Do you also have trouble walking down the stairs like you legs get really shaky and weak? I feel like Ive lost all my muscle... I was thinking it had to do with not eating enough... numb feet is a sign of MS? I guess I have heard of MS but don't really know what it is... I know it can come and go, so one week you could be in a wheel chair and the next walking around... is that true?

Now I do get tingles in my toes when my sciatic nerve in my back is wacky. That hasn't happen since getting out of the restaurant industry tho. This is something very different from pinch nerve feeling.


I used to. I've lost a lot of weight and gotten more fit ad it's not an issue. But yes, peripheral neuropathy is a classic MS presentation, as are cognition issues. Have you mentioned this to your doc? When I first brought it up to my GP back in 2007 he was like "You're getting an MRI stat!." It came back negative. Gonna be doing it again in Nov. Now, if it's just in your legs/feet it might be RLS, also. But I don't know that it would explain the weakness. MS leaves the motor neurons alone, from what I understand, so it doesn't cause loss of muscle tone, but it still makes it pretty hard to walk for extreme cases if they cant feel their legs. The leg weakness might also be partial cataplexies.

EDIT: Apparently, I got mixed up with another condition. MS can affect motor neurons directly.

#6 Megssosleepy

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Posted 04 October 2012 - 03:19 PM

I used to. I've lost a lot of weight and gotten more fit ad it's not an issue. But yes, peripheral neuropathy is a classic MS presentation, as are cognition issues. Have you mentioned this to your doc? When I first brought it up to my GP back in 2007 he was like "You're getting an MRI stat!." It came back negative. Gonna be doing it again in Nov. Now, if it's just in your legs/feet it might be RLS, also. But I don't know that it would explain the weakness. MS leaves the motor neurons alone, from what I understand, so it doesn't cause loss of muscle tone, but it still makes it pretty hard to walk for extreme cases if they cant feel their legs. The leg weakness might also be partial cataplexies.

EDIT: Apparently, I got mixed up with another condition. MS can affect motor neurons directly.


RLS is restless leg syndrome right? That was a no go in my sleep study... I don't move much in my sleep. I can tell when its cataplexy cuz its more sudden... I get scared my knees buckle ect... This is like an all day thing... IDK I will bring it up to my doc on Monday... I think I just need more food and exercise? hmmmmm...

#7 DeathRabbit

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Posted 04 October 2012 - 07:25 PM

RLS is restless leg syndrome right? That was a no go in my sleep study... I don't move much in my sleep. I can tell when its cataplexy cuz its more sudden... I get scared my knees buckle ect... This is like an all day thing... IDK I will bring it up to my doc on Monday... I think I just need more food and exercise? hmmmmm...


Do you ever have bouts of tinglies when changing temperatures quickly? (coming inside during a cold winter day, suddenly jumping a hot shower, etc)
I dread winter myself because whenever I walk into a heated building coming out of the cold winter air, I get an attack that feels like impromptu psychic acupuncture.

#8 flutterbye_xo

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Posted 05 October 2012 - 08:54 AM

Thanks for the info. I will mention the tingling to my doctor. It's more slight than say if my leg fell asleep and I did get it in my arms. I work in healthcare so try not to freak out about everything it could be. I thought of MS the other day but blocked that from my mind in favor of porphyria. I have recently had the dose of my effexor decreased so maybe it's just mini cataplexy. That would be nice. I will still talk to my physician...baah.

#9 Megssosleepy

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Posted 05 October 2012 - 09:47 AM

Do you ever have bouts of tinglies when changing temperatures quickly? (coming inside during a cold winter day, suddenly jumping a hot shower, etc)
I dread winter myself because whenever I walk into a heated building coming out of the cold winter air, I get an attack that feels like impromptu psychic acupuncture.


Hmmmm, I am not really sure. I do hate being cold but I dont think that makes my shakes worse, except for shivering. I guess thats a good thing!

#10 DeathRabbit

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Posted 05 October 2012 - 10:06 AM

Hmmmm, I am not really sure. I do hate being cold but I dont think that makes my shakes worse, except for shivering. I guess thats a good thing!


This started happening to me suddenly in the winter of 06. At first, I thought it was an allergic reaction to a jacket I had just purchased, but I soon realized that wasn't the case. I thought for the longest while that I had a brain tumor or something. Also, cold water burns me. I know, that's weird, but if I stick my hands in really cold water they feel as if on fire.

#11 flutterbye_xo

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Posted 05 October 2012 - 08:51 PM

Do you also have trouble walking down the stairs like you legs get really shaky and weak? I feel like Ive lost all my muscle... I was thinking it had to do with not eating enough... numb feet is a sign of MS? I guess I have heard of MS but don't really know what it is... I know it can come and go, so one week you could be in a wheel chair and the next walking around... is that true?

Now I do get tingles in my toes when my sciatic nerve in my back is wacky. That hasn't happen since getting out of the restaurant industry tho. This is something very different from pinch nerve feeling.



Simply put MS is an autoimmune disease in which the body attacks it's own nerves. It can affect many different body systems (central, visual, speech, throat, musculoskeletal, sensation, bowel, urinary) and have many different presentations. There are several different kinds of MS depending upon the duration of decline or exacerbations. Some viruses have been implicated as causes (epstein-barr, herpesvirus-6, chlamydia pneumonia). Now that I've officially reviewed my MS notes from school I'm gonna need like 2 margaritas. 1 gets me happy 2 gets me comatose. :)

#12 flutterbye_xo

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Posted 05 October 2012 - 09:00 PM

Hmmmm, I am not really sure. I do hate being cold but I dont think that makes my shakes worse, except for shivering. I guess thats a good thing!


So I've only had these slight tingles about 2 weeks. And I just turned 26 :( I feel like I should be healthy. Now that I got the whine out...I first thought it was just me having chills so it's mostly my legs (once my arms) when I stand up or sit down or when the temperature changes. It doesn't have to be an extreme temperature change but definitively a change. When I get out of bed it's colder so maybe it's all temp related. Idk. Thanks for the replies. They make me feel better even though I worry anyway.

#13 MINItron

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Posted 05 October 2012 - 09:22 PM

So I've only had these slight tingles about 2 weeks. And I just turned 26 :( I feel like I should be healthy. Now that I got the whine out...I first thought it was just me having chills so it's mostly my legs (once my arms) when I stand up or sit down or when the temperature changes. It doesn't have to be an extreme temperature change but definitively a change. When I get out of bed it's colder so maybe it's all temp related. Idk. Thanks for the replies. They make me feel better even though I worry anyway.


If it's only happening in your extremities when you get colder maybe it's Raynaud's phenomenon.

#14 DeathRabbit

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Posted 05 October 2012 - 11:09 PM

So I've only had these slight tingles about 2 weeks. And I just turned 26 :( I feel like I should be healthy. Now that I got the whine out...I first thought it was just me having chills so it's mostly my legs (once my arms) when I stand up or sit down or when the temperature changes. It doesn't have to be an extreme temperature change but definitively a change. When I get out of bed it's colder so maybe it's all temp related. Idk. Thanks for the replies. They make me feel better even though I worry anyway.

I'm sure it's nothing!:) After all, what are the chances you'd have two really rare diseases???

#15 flutterbye_xo

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Posted 06 October 2012 - 08:39 AM

If it's only happening in your extremities when you get colder maybe it's Raynaud's phenomenon.


Good point. I think my mom gets that but not diagnosed. She's always had problems with the cold.

#16 MINItron

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Posted 06 October 2012 - 12:14 PM

Good point. I think my mom gets that but not diagnosed. She's always had problems with the cold.


The phenomenon has a ton of causes, and ranges from very mild to so severe that it can cause the loss of digits. I have some friends that have it as well. They wear gloves, and wool socks all the time to keep their hands and feet warm. Wool is good because it will keep you warm when it needs to and cool when it needs to.

#17 Megssosleepy

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Posted 08 October 2012 - 09:30 AM

I hate that everything seems so up in the air! I hate feeling like a hypochondriac but when I get all these unexplained weird happenings I can't help but wonder! My doctors prolly think I am nuts!

#18 DeathRabbit

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Posted 08 October 2012 - 10:29 AM

I hate that everything seems so up in the air! I hate feeling like a hypochondriac but when I get all these unexplained weird happenings I can't help but wonder! My doctors prolly think I am nuts!


I've started doling out my symptoms in small doses to the docs so I get taken more seriously. They seem to be dismissive of you if you list too many new things each time, so I just keep it to the greatest hits.

#19 LauraL

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Posted 08 October 2012 - 10:09 PM

I've started doling out my symptoms in small doses to the docs so I get taken more seriously. They seem to be dismissive of you if you list too many new things each time, so I just keep it to the greatest hits.


I'm doing that, too, but it's mostly because of the 15-minute office visit. Part of me wants to call and say, "Can you book me for an hour? I've got a lot of stuff."

#20 LauraL

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Posted 08 October 2012 - 10:17 PM

I was wondering if anyone ever experiences slight tingling in legs and/or arms right when they get out of bed. This has been a new symptom for me and I'm not sure if it's related to narcolepsy. I've always been the dummy that reads and sits with my legs all folded up and had sleepy limbs. I know neurological tingling can be indicative of other serious problems (Stroke or Diabetic Neuropathy- I know I don't have either) and am just hoping it might be a narco thing.


Yes! When my sleep issues first started, last December, I woke up every single morning with my hands and feet doing the pins-and-needles thing. It was very strange. I asked my doctor about it, and he didn't really have much to say about it. Said he thought it might be from a vit D deficiency (he had me test, and I was low--I guess a huge portion of the population is, though, now that we all spend so much time in doors), but wasn't sure. He didn't seem very worried about it, and neither did the sleep neurologist I saw. It's gone away for the most part. Funny thing, though, about the same time that happened, I woke up one morning and noticed that there's a an area on the front side of my left leg where I no longer have any feeling. Completely numb--no sensation. That hasn't changed. My doctors took a "wait and see" approach with that, too. I have a referral to see a new neurologist, though, now that I've developed even more symptoms (vertigo, extreme clumsiness, slurred speech), so hopefully someone can figure out what's going on!

If you find out anything about the tingles, let me know, yes?