strange feeling passes up whole body like a wave

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strange feeling passes up whole body like a wave

Postby fragle2 » Wed Nov 03, 2010 7:57 am

has this happened to anyone- I have the strangest thing happening to me and I am not sure if its a warning that I am in/about go in to relapse- I have recurring TM and so far every time I get it I also get a really weird sensation that travels up my whole body like a massive very deep shiver. It starts about my thighs (may be lower but I have no feeling in my lower legs) and works up though my body to my neck. It happens when I am lying down and goes on until I fall asleep. Its not painful but just strange. The first time it happened I was on IV steriods in hospital and thought it may be a side effect. But this is the 3rd time since I got home. Its quite a scarry feeling as its feels as if its happening from skin layer to deep inside my body. Anyone ?
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Re: strange feeling passes up whole body like a wave

Postby sandra130768 » Thu Nov 04, 2010 3:04 am

Hi Fragle

I also experience this strange sensation but i just assumed it was part of the TM as i have alot of numbness that changes every day. I also experience a banding feeling around my rib cage however i haven't experienced that in about 6 weeks now. I'm 7 months in with my TM and am still backwards and forwards to doctors as they are trying to find the right medication I am now on pregabalin and that seems to be taking the edge of it so they are uping the dosage gradually over the next few months. I have had alot of Physiotherapy but i am still having to walk with 2 crutches and can only walk small distances.

I personally do not think this strange feeling is anything to worry about I do think it is part of the TM however if you are worried about it maybe you should mention it to your doctor or neurologist.

Take Care

Sandra xx
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Re: strange feeling passes up whole body like a wave

Postby Louise E » Thu Nov 04, 2010 5:59 am

Hi Fragle

I too experienced the exact strange wave-like sensation that you described, mine started when I was receiving steroids in hospital and then gradually ceased over a period of about 4-6 weeks if memory serves me correctly?? I did ask my neurologist about this and he said that they were a particular type of spasm, sorry I don't recall the name he gave them but he basically kept an eye on things and was not overly concerned.
Try and not worry but as Sandra said if they continue or are causing distress it's best to let your doctor know.

All the best
Louise
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Re: strange feeling passes up whole body like a wave

Postby fragle2 » Thu Nov 04, 2010 11:26 am

at least I know I am not going crackers! But it is is the weirest thing!! Thanks I will mention it to my neuro I see him again on the 23rd nov.
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Re: strange feeling passes up whole body like a wave

Postby John Mathews » Thu Dec 16, 2010 3:55 am

Glad to have seen this post.... only a little more than one full month into TM, but WOW.... The "strange" sensation SUCKS! Well, at least the one I get. It was almost enough to make me sick from even thinking about it yesterday. Almost like a tickle, but more of a mushy electrical wave of pulling or such that goes up my leg. Here's the worse part, when I put my head down, it triggers that feeling.. so going to bathroom means "weird feeling" :-o Or, even just looking down in general. Feels like I'm pulling the cable to my legs when looking down, LOL. I know that isn't the case, but the whole thing triggers this mind game .

My doctor never even offered meds. for "sensations".... not sure the meds would be worth it though.... It's a feeling, not an actual limitation as such.... I'm hoping I will overcome the feeling and get use to is at some point.....

Anyone else have something similar with head down relating to trigger the strange wave?

thanks,

John Mathews
John Mathews

First TM symptoms 11-13-2010...newbie
When do I get better?
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Re: strange feeling passes up whole body like a wave

Postby John Mathews » Thu Dec 16, 2010 2:23 pm

LOL.... :ymblushing: Okay to be fair.... I'm not going to "ignore" this thing. I thought I could, but today was another tough day. That strange feeling is every time I put my head down. Even turning or looking left or right. I am sort of worried... but I can't keep going to doctors... I'll end up fired and have no money and no insurance and no nothing..... When does TM stop advancing or settle down? EVER!? :-o
John Mathews

First TM symptoms 11-13-2010...newbie
When do I get better?
John Mathews
 
Posts: 13
Joined: Mon Dec 06, 2010 2:59 pm

Re: strange feeling passes up whole body like a wave

Postby jmaygers » Fri Dec 17, 2010 5:45 am

John, what you are describing sounds like L'Hermittes sign which is a sensation attributed to cervical spinal lesions, such as in transverse myelitis. It's electrical sensations down the back and limbs when you put your chin toward your chest. I won't say it's NORMAL, but many of us with cervical lesions experience it. While it is uncomfortable, it isn't harmful and it generally isn't indicative of a new problem. See if your doctor agrees.
Joyce
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Re: strange feeling passes up whole body like a wave

Postby John Mathews » Tue Dec 21, 2010 2:38 pm

jmaygers wrote:John, what you are describing sounds like L'Hermittes sign which is a sensation attributed to cervical spinal lesions, such as in transverse myelitis. It's electrical sensations down the back and limbs when you put your chin toward your chest. I won't say it's NORMAL, but many of us with cervical lesions experience it. While it is uncomfortable, it isn't harmful and it generally isn't indicative of a new problem. See if your doctor agrees.
Joyce


Thanks Joyce. Glad you knew what I was talking about. Believe it or not, I have become "use to" it. Not happy about it, as it still is a little scary. With all the other scary things though, I guess this one is far down on the list. :)

As time has gone on, I've notices that my panic/anxiety level has risen. (so has my heart rate at times). Trying Xanax again. On very low dose, but it seems to do the trick. I hate taking it. Doctors weren't much help though. The strange feeling thing is just weird. However, I am thankful that it is "normal" from what I can tell after you mentioned L'Hermittes. I am still worried to death that I have MS. I put off the testing for fear of loss of job an of insurance next year. I am still at a loss. I was fine in early November.... get a flu shot... two weeks later, this! I'm told "they don't know what causes TM". Anyway.... just praying things get better. It's been about 5 weeks now.

Thanks for the listen..... Thanks for the comment.

A friend in need :ymblushing:

John Mathews
John Mathews

First TM symptoms 11-13-2010...newbie
When do I get better?
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