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#1 Ryan

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Posted 25 November 2008 - 11:07 PM

Today I was just sitting in class when all of a sudden I felt an electric-like sensation go down my whole right side. This made my right leg go numb from 9:00am-4:30pm. Then it came back with another shock at 8:30pm. My right arm also went numb and my right hand started to turn purple. Then my arm came back, all but my shoulder, and this happened at the same times. My fingertips have been going numb as well. And when I say they are numb, I mean that they feel as though they weigh a ton.


I just want to thank everyone who posted replies on my last topic, and who is replying to this one.

#2 shallow_water

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Posted 25 November 2008 - 11:56 PM

Sorry your having a tough time Ryan.

Have you ever had an injury to your neck? The tingling and numbness in your extremities may be caused by a slipped disc or nerve impingment.

I get the tingling & numbness on occasion too and boy oh boy this neck thing can give me awful headaches and make me run to the bathroom 150 times a day! " Run forest Run"

No need to freak but I certainly would let the doc know as soon as you can. Hang in there kiddo.

#3 dogdreams

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Posted 26 November 2008 - 09:48 AM

Yeah I'd see a doctor about that one.

#4 chimbakka

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Posted 26 November 2008 - 11:00 AM

I would de
paresthesia is listed as a side effect of modafinil, and i've heard others c/o of this type of thing you are having (paresthesia is pins and needles, you can google it and it'll tell u more). it can also cause dyskinesia (involuntary tics or twitches) among other things. it acts on your central nervous system, and a lot of the side effect reflect this (muscles, nerves, body temp, sleep, stomach/anorexia - all tied to cns). I would definately call your doctor and let them know what you are experiencing, i would bet its a reaction to the modafinil. all drugs have side effects, and the trick is to find one with side effects you can live with. going numb and turning purple (which may indicate vasocontriction and may also be why you are getting the tingling rather than from specific nerves) are not side effects i would particularly like to have, i'd rather be sleepy. when you call them please tell them exactly what's going on, if it is from vasoconstriction your bp might be up and you dont want problems...



#5 jenji

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Posted 26 November 2008 - 12:52 PM

You should definitely call your doctor and if your doctor is not a neurologist, see one.

jenji

#6 sleepless sleeper

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Posted 27 November 2008 - 12:10 PM

cut and pasted to other topic

#7 too exhausted

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Posted 27 November 2008 - 12:51 PM

QUOTE (Ryan @ Nov 26 2008, 04:07 AM) <{POST_SNAPBACK}>
Today I was just sitting in class when all of a sudden I felt an electric-like sensation go down my whole right side. This made my right leg go numb from 9:00am-4:30pm. Then it came back with another shock at 8:30pm. My right arm also went numb and my right hand started to turn purple. Then my arm came back, all but my shoulder, and this happened at the same times. My fingertips have been going numb as well. And when I say they are numb, I mean that they feel as though they weigh a ton.


I just want to thank everyone who posted replies on my last topic, and who is replying to this one.

My left side feels different to my right side, a lot weaker and slightly numb. When my narcolepsy got bad 5 yrs ago my left side of face, head, neck, arm and hand went numb. This lasted for about two years whilst on provigil. Now 3yrs on my left side still feels slightly numb. I have read of other PWN affected by this numbness.
Now when I go to bed my hands go numb straight away, I can't feel them. I have to have them out of the bed and holding onto something so I know that they are still there. My arms and hand also go dead and feel really cold.
My left leg, hip, foot just give way and feel numb for a few hours afterwards.
In bed I get pains in my arms and legs which go from cold, numb and heavy to a pounding, painful sensation which feels like my nerves are twitching, itching and it really hurts. When I get this feeling it makes me feel sick with the pain.
My GP put it down to sleep exhaustion. My sleep specialist put some of it down to cataplexy.
Its really scary. Sorry you aren't having a good time.

#8 Lais02

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Posted 30 November 2008 - 05:04 AM

weird... I know exactly what you're talking about.

The thing is though... everyone has told me that it has NOTHING to do with N lol. I don't know if that's the case though... maybe they just haven't figured it out yet. I was seeing a neurologist years ago... way before a N diagnosis about my hands and arms going numb. They never figured it out though. So I don't know what to tell you other than, I know exactly what you're talking about smile.gif

#9 jenji

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Posted 30 November 2008 - 02:31 PM

I was dx'd 20 years ago with Raynaud's and that'll play havoc with your hands and feet going numb for no reason at all; it doesn't even have to be cold outside. Sometimes they turn blue as they come back to life, but most of the time I don't even look at my feet to see what color they are anymore b/c I'm so used to it happening and my corpse white fingers get comments all the time, especially once they start turning purple/blue. I've never really kept track per se as to how long they may or may not be numb thoughout a given day, however I can say that way back when it started happening it did concern me a bit more b/c I had no clue as to what it was.

You should definitely see a neurologist. Did they check you for MS?

jenji

#10 sleepless sleeper

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Posted 30 November 2008 - 07:36 PM

QUOTE (Ryan @ Nov 25 2008, 09:07 PM) <{POST_SNAPBACK}>
Today I was just sitting in class when all of a sudden I felt an electric-like sensation go down my whole right side. This made my right leg go numb from 9:00am-4:30pm. Then it came back with another shock at 8:30pm. My right arm also went numb and my right hand started to turn purple. Then my arm came back, all but my shoulder, and this happened at the same times. My fingertips have been going numb as well. And when I say they are numb, I mean that they feel as though they weigh a ton.


I just want to thank everyone who posted replies on my last topic, and who is replying to this one.


I really got my posts to you mixed up. I replied to this post, thought it was a reply to another post so I cut and pasted it there. Now I realize that what I typed about going to a children's hospital in Chicago was meant to go here. Yep, boy, I'm on top of things. You might want to see if this stuff is related to epilepsy in any way. Talk to your doc that treats the epilepsy about what you've written. If it's a problem to get to the doc, write him a letter with the same info here and wait to here back from him. I put the info about going to a children's hospital because it can usually be cheaper. Hope all is well and that we hear from you again.

#11 sleepless sleeper

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Posted 30 November 2008 - 07:50 PM

QUOTE (jenji @ Nov 30 2008, 12:31 PM) <{POST_SNAPBACK}>
I was dx'd 20 years ago with Raynaud's and that'll play havoc with your hands and feet going numb for no reason at all; it doesn't even have to be cold outside. Sometimes they turn blue as they come back to life, but most of the time I don't even look at my feet to see what color they are anymore b/c I'm so used to it happening and my corpse white fingers get comments all the time, especially once they start turning purple/blue. I've never really kept track per se as to how long they may or may not be numb thoughout a given day, however I can say that way back when it started happening it did concern me a bit more b/c I had no clue as to what it was.

jenji

I wasn't dx'd w/ raynauds, but I wonder if i have it. My feet, especially toes, get blue A LOT. I also get tingling/ numbness in arms, hands, and feet. I have had a herniated disk in my neck for about 9 years, and two neurosurgeons and three neurologists have all said that the numbness/ tingling that I get is not related to it at all. I've had a test that tests for nerve damage, but thankfully it came back a-okay, but why on earth do I get the tingly feelings and or numbness? It's just too weird. I am still amazed at how many symptoms N share with one another that seem unrelated to this disease.

You should definitely see a neurologist. Did they check you for MS?


This is scary to read. If you haven't seen any of my older posts, I talk about having some symptoms that are similar to MS.

Ryan, Please talk to your epilepsy doctor. If he is not a neurologist then please visit one. Although some symptoms may be similar, you still need to definitively rule out other diseases that could have a more serious affect on your health.

Even though some of the answers that we've posted seem a bit dark, I believe that things really are okay. We all want to make sure that you get all bases covered, and that's all.

Please give us a follow up! Have a great evening.

#12 too exhausted

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Posted 01 December 2008 - 06:42 AM

If you have had an MRI scan on your brain it will have ruled out MS. The feeling with MS is more like walking on cotton wool than a numbness. Here is a link to another site which is free and you can join the narcolepsy, epilepsy sites on this one forum. It covers nearly all conditions.

http://dailystrength.../support-groups

The more support the more knowledge.

#13 Lais02

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Posted 01 December 2008 - 08:57 AM

QUOTE (too exhausted @ Dec 1 2008, 05:42 AM) <{POST_SNAPBACK}>
If you have had an MRI scan on your brain it will have ruled out MS. The feeling with MS is more like walking on cotton wool than a numbness. Here is a link to another site which is free and you can join the narcolepsy, epilepsy sites on this one forum. It covers nearly all conditions.

http://dailystrength.../support-groups

The more support the more knowledge.


Good... I did have an MRI so I guess I'm in the clear for MS. For me this is a very on and off problem. I had gone to many doctors about it, but none of them ever could figure it out. The closest they got was saying that is seemed just like carpal tunnel, but it wasn't lol smile.gif

good luck!

#14 too exhausted

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Posted 02 December 2008 - 08:41 AM

QUOTE (Lais02 @ Dec 1 2008, 01:57 PM) <{POST_SNAPBACK}>
Good... I did have an MRI so I guess I'm in the clear for MS. For me this is a very on and off problem. I had gone to many doctors about it, but none of them ever could figure it out. The closest they got was saying that is seemed just like carpal tunnel, but it wasn't lol smile.gif

good luck!


MS and epilepsy cause scarring on the brain. My mum had both.
My GP thought I had ME and carpal tunnel because of my body weakness and my hands, arms giving way and going numb etc. My sleep specialist put both down to cataplexy. Cataplexy can be full body weakness, eyelids twitching. slurred speach, jaw dropping, legs giving way, basically any form of muscle weakness. Because are symptome are like so many others it hard to get the correct diagnoise.

#15 Marcianna

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Posted 03 December 2008 - 01:51 AM

Ok I can definately say I am one of the many of us that has experienced this numb tingling and electric shock symptom. But the one thing that really bothers me about What Ryan is describing is that his fingers and hand were turning purple. That is CLEARLY a sign of blood loss to the extremity right? I am worried this is not something we are familiar with after all. I could be wrong please please please correct me if I am. but that is just something I could not ignore....

good luck Ryan!

#16 chimbakka

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Posted 03 December 2008 - 02:39 AM

one of the side effects of modafinil can be vasoconstriction(which leads to increased bp and can cause extremeties to lose blood if they are very constricted)

#17 sleepless sleeper

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Posted 07 December 2008 - 06:14 PM

QUOTE (jenji @ Nov 30 2008, 12:31 PM) <{POST_SNAPBACK}>
I was dx'd 20 years ago with Raynaud's and that'll play havoc with your hands and feet going numb for no reason at all; it doesn't even have to be cold outside. Sometimes they turn blue as they come back to life, but most of the time I don't even look at my feet to see what color they are anymore b/c I'm so used to it happening and my corpse white fingers get comments all the time, especially once they start turning purple/blue. I've never really kept track per se as to how long they may or may not be numb thoughout a given day, however I can say that way back when it started happening it did concern me a bit more b/c I had no clue as to what it was.

You should definitely see a neurologist. Did they check you for MS?

jenji


I just read user Schooze 's post from April requesting other NN user quotes for a letter. I went to her website that she links to and saw that her Renaud's and N symptoms were under control through diet and exercise regimen. Thought this would be a resource for you guys.

#18 sleepless sleeper

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Posted 07 December 2008 - 06:25 PM

I've lost my edit button. RE: previous post: user name should be Shooze instead of Schooze.

#19 jenji

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Posted 07 December 2008 - 06:31 PM

If you have Raynaud's, you definitely know it by sight. There's nothin wishy-washy about what it does to your skin--the symptoms are more than obvious, especially on your hands and feet. If you're still not sure or even just curious, they have some perfect images of it on wikipedia, under Raynaud's phenomenon. I'm not a big proponent of Wiki so to speak, but the images are right on.

Maybe that'll help sort some things out. It's an obnoxious and at times painful deal, but overall one can learn to deal with it by wearing appropriate clothing (especially covering your head, I wear a ski hat in the house, sometimes even in the summer), eating properly, avoiding harsh changes in temperature and taking quick action upon any flares by gently heating the affected areas up again. Then again, sometimes there is no rhyme or reason to a sudden attack. My friends in particular are fantastic about it; I can't tell you how many times I've had my feet in someone else's armpit lol, as a matter of fact, just last night I had my feet jammed up in someone else's nonsense as I was opening birthday presents smile.gif!

My favorite: when I was 17, we were at a Big East tournament for volleyball and I was the starting setter for the team and wouldn't you know it, the starting setter couldn't feel her feet! So, cut to an image of my coach taking two time outs and then a medical time out as he literally sat on the sidelines with my feet in his lap and a blowdryer in his hand. True story.

Good luck.

jenji

#20 sleepless sleeper

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Posted 07 December 2008 - 08:24 PM

I don't have it. I just wanted to supply the info.

My husband is a v-ball fanatic, and man, does he love women that play (he used to.) The taller the better. wink.gif