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Old 03-09-2011, 06:43 AM   #1
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Tingling when laying down only

I have had MS for over 20 years with 3 relapses. I have no residual symptoms in all these years.

A couple years ago my hands started tingling only when I would lay flat on my back at night. Would make me crazy, finally after a couple months I went to see my neuro and she checked for carpal tunnel and did a full MRI. She didn't see anything ( i guess she felt it wasn't MS related). Eventually it went away.

2 nights ago i started again, but didnt mater if I lay in my back, or side. Both hands were tingling like MAD, so I would sit up and shake them to make it stop. This morning even after waking up I feel a sligjht tingle in my feet and sublte tingle in my left hand.

it sounds MS related to me, has anyone else has the same thing happen? I know it's a silly question considering tingling is a symptom of MS. But it's how it is presenting itself I find unusual.

Last edited by Flutterbye77; 03-09-2011 at 06:43 AM.

 
Old 03-09-2011, 07:11 AM   #2
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Re: Tingling when laying down only

For tingling hands I either wear some gloves or I soak my hands in cold water. For me the cold water soak is most effective in the spring and summer, but I have used it in the winter too. Often during the winter the tingling, numbness, or pain is attributed to the cold weather. A pair of gloves works wonders. I wear a pair with thinsulate. I know they have special gloves for arthritic pain which might help too.
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Old 03-09-2011, 07:37 AM   #3
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Re: Tingling when laying down only

I just thought it was weird it only happens when I lay down. Usually when I lay flat on my back but like I said it's on both sides. it went away for a long time but came back. My feet do feel a little tingly today... geeeez I hate this.

I am not or ever been sensitive to the heat or cold with my MS. I have lived in Dallas with the extreme heat and Colorado with the cold. Doesn't affect me what so ever in over 25 years years. That's really how long I had it, but not first dx. I probably had it longer.

I am a native of Colorado but moved to Dallas and now back to Colorado. I haven't seen a neuro here yet, if anyone could recommend one. I used to go to the MS clinic, but I looked it up online and it doesn't look like it's in Swedish anymore.

Last edited by Flutterbye77; 03-09-2011 at 12:28 PM.

 
Old 03-09-2011, 07:42 AM   #4
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Re: Tingling when laying down only

Contact your local MS Association or Society office and they can give you a hand in finding the right doctor. My hand pain started when I was 16, but it worsened in 2002 and has been a consistent problem since 2002. Though you have not had a problem before, it could be a result of the progress of your MS.
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Old 03-09-2011, 08:05 AM   #5
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Re: Tingling when laying down only

Yeah it could be, I stopped my copaxone almost a year ago because one night it shot my blood pressure up to 190/110. each time after my pulse would race. Even though I have been on the med for over 15 years, it just started to give me strange reactions.

I can't and wont do beta or the others. So really this is where I am at. Mabe I'll look into the CCSVI. I am terrible at keeping up with MS stuff because for me it's out of sight out of mind. I don't focus on MS at all. I have known people where it consumes their whole life, I just never wanted to be that way. I see a neuro oncve every 2 years and thats for a MRI.

Last edited by Flutterbye77; 03-09-2011 at 08:06 AM.

 
Old 03-09-2011, 08:45 AM   #6
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Re: Tingling when laying down only

I do not do meds and I consider the CCSVI to be another passing fad. My MS Neuro sees me every 6 months to keep tabs on me. There is life out there without DMDs and I have been enjoying it for over 33 years. Stay strong!!
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Old 03-09-2011, 11:29 AM   #7
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Re: Tingling when laying down only

Flutterbye, wow, I've never heard of a 15 year user of copaxone. Can you share more about how you dealt with the needles all of these years? Are you thinking stopping it is associated with the tingly? Just curious....

 
Old 03-09-2011, 12:27 PM   #8
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Re: Tingling when laying down only

No I do not think stopping the copaxone has anything at all to do with the tingling. It happened when I was on it. I just had 3 babies one after another youngest is 3. I think it started after the last one, I think I might have pinched a nerve. I was out shopping all day and running around. I don't notice it. Maybe I need to see a chiro because my 3 and 4 year old sleep in the bed with my husband and I and I feel like I am always falling off the bed. Not to mention carrying my kids all over. Not great for a back.

One thing I don't do is assume everything I get is MS related and usually it's not! But in this case it seems a little odd, but when I shake my hands after laying down if it was MS it wouldn't go away. My neuro agreed but seemed a little puzzled. Like I said before she ran a full scan of the spine, neck and brain and didn't see anything.

it went away, now it's back after 2 years. Hopefuly it will go away soon again!

 
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