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Old 02-11-2008, 09:16 AM   #1
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Is there always numbness with MS?

I keep going back and forth with this question in my mind. My spinal tap is tomorrow and I'm making every excuse as to why I shouldn't get it done. "Well, I don't have this" or "I don't have that." etc. I know there's a lot of fears, but over the weekend, especially last night, I started feeling a little better. OR maybe my adrenaline is keeping me going right now. I don't know.

So, does anybody here have MS without numbness in any limbs? I was talking to a man the other day who said that pins and needles is the same as numbness, and I disagreed because that STILL is feeling. What's your opinions?

 
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Old 02-11-2008, 12:27 PM   #2
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Re: Is there always numbness with MS?

Nuthatch...I will only speak from my experience. I'm told that it is MS I have. My only boubt with numbness was some 32 years ago and haven't had any other incident again. So with that said I would have to say 'NO'. That's my two cents.....

 
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Old 02-11-2008, 12:34 PM   #3
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Re: Is there always numbness with MS?

Hi Avenue. So, what you're saying is that you have MS, had numbness 32 years ago, but its never returned. Am I understanding this correctly? I can be so slow at times. Where's the embarrassed silly face?


 
Old 02-11-2008, 02:37 PM   #4
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Re: Is there always numbness with MS?

Nuthatch, NO pun intended...which came first, the chicken or the egg?

I would absolutely LOVE to know the answer to YOUR question. Heres what Ive been told..

Numbness and/or pins and needles is the MS phrase for what is technically known as parastasia... this being the feeling of burning/ tingling/pins and needles with pain associated. Ive had this in my left hand and fingers now for 2 full years! It never went away. Upon further testing, Ive been told it is the MS which caused it...myelin damage which cannot be fixed and was too far gone to reverse itself. Doctors ask me all the time, is it numb? Well, in the sense that I have a hard time using my hand- can pick up things, but cant feel them...can put weight on it, but drop things and lastly, can squeeze, but cant squeeze with nearly the strength of my other hand.....they call this numbness. I call it both painful as well as aggravating. YES I can feel it, all the time, however believe it or not, it gets easier to forget about as time goes on.

Nuthatch- I know youre terrified (and with good reason) about the spinal tap- go get it done. Rule out all the other things which could be happening...youll be okay. Its something so many of us have managed to get thru. Terrifying, yes, but overall, the anxiety is so much worse than the actual test...
Ill be thinking of you..
hugs
Nikki
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Old 02-11-2008, 03:54 PM   #5
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Re: Is there always numbness with MS?

If you have not read the wealth of information on here about spinal taps, then just a note to start drinking coffee, lots of caffeine, from the time you wake up tomorrow, during and after the test. I never drink it past noon and I slept fine the night of because I was so exhausted from the ordeal. My neuro that did the test said, in response to, "So if I get a headache, do I take Tylenol or Ibuprfen" with "No, you lay down, DO NOT GET BACK UP, and drink coffee, eat chocolate and relax." I did as told, let the family get along by themselves and other than being a little sore, came through with only a mild soreness to my back for a few days. Good luck.

 
Old 02-11-2008, 04:50 PM   #6
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Re: Is there always numbness with MS?

Nikki, LOL! The chicken, of course! That would be Genesis - And out of the ground, the Lord God formed every beast of the field, and every "fowl" of the air. Sorry, I couldn't resist.

Anyway, back on subject. I get pins and needles but it's not every single day. My arms and leg muscles go from extremely tense to extremely weak. It's as though my legs are there but disconnected to the rest of my body. When my legs are that weak, you could pick one up to massage it, and it's like my leg muscles don't even try to fight what you're doing. Normally they would, or at least contract, but it's like they're dead but 'with' feeling. Totally limp. If you'd let go of my leg, it would go down with a thud. Kaboom! Then, of course, my entire body starts trembling. I hope that makes sense. And yes, I'm going to do this, even being terrified. I've thought about it all day. I have waited too long!!

MS for life, yes, I've read all the great information on the board of what to do before, during and after, but thank you for taking the time to come in and comment. I'm already loading up on caffeine now, but that's really nothing new. It's just a bit more than usual. I was also told to do this the day before the procedure. Any opinions regarding the numbness?

 
Old 02-11-2008, 05:25 PM   #7
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Re: Is there always numbness with MS?

Nuthatch, nice to know you havent lost your sense of humor even today, the day before the big test...lol. Loved your comments, thanks!

I have been thinking about what you are describing and trying to put a name to it, and Im not coming up with anything for certain. Sometimes, what you describe, like the last post - sounds more like muscle spasms..going from limp to tight- but muscle spasms, in my opinion, dont feel like pins and needles- those are more like typical MS complaints. ITs highly possible, probable even, that you are experiecing both spasms and parastesia or numbness. Numbness is the dumbest word in the world, because YES you can still feel it and in my case, it HURTS! But its the only word that Neuros use- unless you want to get technical and call it parastasia....but you seem to flucuate between both types of disorders, the spasms and the tingling...way to go girl, as if we didnt have enough problems getting you diagnosed!

whatever it is, rest assured, you arent describing anything that thousands of others havent (including me) described. Frustrating, yes. Painful at times. Scary at times. Welcome to my world....eventually, it goes away or at least it randomly comes and goes...and in betweeen you stop being scared of it and learn to live with it...in the meantime, there are meds you can take for the symtoms and you should probably discuss this with your doc when you get your spinal results...but in the interim- just try to relax. Make a game of it? Count how many times your muscles jump or time how long the tingling lasts? Im trying to take your mind off tomrorw, how am I doing?
Hugs girl- stay strong and just know that this too, will pass. (My affirmation for the week!)
Nikki
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Old 02-11-2008, 05:45 PM   #8
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Re: Is there always numbness with MS?

You're doing great, Nikki. I'm getting a bit giggly because of all this caffeine. I'm usually done by 8 o'clock at night. Usually! But it's like weeeeeeeee right now. LOL!

Back to the muscles, this is all new for me, especially the limp feeling. My "Fibro" *cough* muscles were always hard and tense. I didn't experiences these weird feelings in my legs until hmm, December 2007. Back in 2005, right above both knees, my muscles went hard for a year. No kidding! They never relaxed and felt like softballs were in there. In fact, it was round like a softball. Weird stuffins!! Hmm, now that I think about it, I did go to see the doc about it and was told it was lipoma, which is a common, benign tumor composed of fatty tissue. Uh huh, yeah right. Well, that finally went away and now it's in my thigh muscles but only when I get in and out of the shower. Huge, huge, HUGE muscle contraction! The thing is, I don't feel pain with it anymore. *gives confused look*

I better stop before people think I'm more insane. It seems that you and I can go on forever. Real talkers but it's all good! It makes me wonder if you're another Gemini, too.

 
Old 02-11-2008, 05:51 PM   #9
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Re: Is there always numbness with MS?

Quote:
Originally Posted by Nuthatch View Post
I keep going back and forth with this question in my mind. My spinal tap is tomorrow and I'm making every excuse as to why I shouldn't get it done. "Well, I don't have this" or "I don't have that." etc. I know there's a lot of fears, but over the weekend, especially last night, I started feeling a little better. OR maybe my adrenaline is keeping me going right now. I don't know.

So, does anybody here have MS without numbness in any limbs? I was talking to a man the other day who said that pins and needles is the same as numbness, and I disagreed because that STILL is feeling. What's your opinions?
The Spinal Tap is a necessary part of the test, but 15% of MS patients have normal LP results.

I had numbness in 1982 and 1983 and no numbness again until 2002. Nowadays numbness is continually with me (the areas change). I agree that numbness is different than "pins and needles". As we are uniquely created, numbness will likely vary (my opinion).

 
Old 02-11-2008, 06:03 PM   #10
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Re: Is there always numbness with MS?

Quote:
Originally Posted by MSJayhawk View Post
The Spinal Tap is a necessary part of the test, but 15% of MS patients have normal LP results.

I had numbness in 1982 and 1983 and no numbness again until 2002. Nowadays numbness is continually with me (the areas change). I agree that numbness is different than "pins and needles". As we are uniquely created, numbness will likely vary (my opinion).
Do you happen to know why MS patients get normal results? Could it be that the lesions aren't active, or you're not having a flair up? I don't even know if I'm making sense because I'm still learning all this. I just hope to get answers soon. I don't feel like I'm living like a Fibro patient anymore. I feel like I'm losing brain cells, and whenever or wherever they're going, it seems my body does this weird little dance. And yes, believe it or not, I'm laughing at myself... at the moment, anyway. Tomorrow I may be down on my knees in tears. I swear I've gone bipolar. *grins*

 
Old 02-11-2008, 07:10 PM   #11
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Re: Is there always numbness with MS?

Quote:
Originally Posted by Nuthatch View Post
Do you happen to know why MS patients get normal results? Could it be that the lesions aren't active, or you're not having a flair up? I don't even know if I'm making sense because I'm still learning all this. I just hope to get answers soon. I don't feel like I'm living like a Fibro patient anymore. I feel like I'm losing brain cells, and whenever or wherever they're going, it seems my body does this weird little dance. And yes, believe it or not, I'm laughing at myself... at the moment, anyway. Tomorrow I may be down on my knees in tears. I swear I've gone bipolar. *grins*
The 15% figure is not explained. I have never read the reason why. I have always had a normal LP reading. My Evoked Potential Test, Spinal MRI, and contrast MRI provided my doctors with my diagnosis in 2002 of PPMS and my original diagnosis in 1982.

 
Old 02-11-2008, 08:00 PM   #12
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Re: Is there always numbness with MS?

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Originally Posted by MSJayhawk View Post
The 15% figure is not explained. I have never read the reason why. I have always had a normal LP reading. My Evoked Potential Test, Spinal MRI, and contrast MRI provided my doctors with my diagnosis in 2002 of PPMS and my original diagnosis in 1982.
You always have a normal LP reading? Just wow! I'm hoping tomorrow is going to be the end of my tests for a while. *crosses fingers for answers*

Thanks for replying back.

 
Old 02-11-2008, 08:38 PM   #13
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Re: Is there always numbness with MS?

Hi Nuthatch....heading to bed, but read your posts...Im a scorpio, but my best friend is a gemini! We are very compatible.
Hey, best of luck tomorrorw...Ill be thinking of you- and when you are there, think of all of us, too. Sending prayers and hugs..
Nikki
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Old 02-11-2008, 10:45 PM   #14
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Re: Is there always numbness with MS?

Quote:
Originally Posted by MSNik View Post
Hi Nuthatch....heading to bed, but read your posts...Im a scorpio, but my best friend is a gemini! We are very compatible.
Hey, best of luck tomorrorw...Ill be thinking of you- and when you are there, think of all of us, too. Sending prayers and hugs..
Nikki
You bet I will, and thank you!

 
Old 02-12-2008, 04:53 AM   #15
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Re: Is there always numbness with MS?

I was petrified of havng my spinal tap, and I mean screaming inside because I was SO frightened. Its a proceedure most people would'nt want done and who can blame them. However, I knew that in the long run, this would help identify what was and is going on for me so I had to be brave.
I had it done and I can honestly say, hand on heart there was nothing to be worried about atal. It didn't hurt, not one bit and before I knew it, it was all over. If someone said to me have it done again, I would'nt jump for joy as there as other things I would prefer to do, BUT I would do it and so must you. It will give you answers and provide an answer to maybe some of the concerns and questions your trying to get answers to. Good luck and please get it done, its important you do...Hugs....

 
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