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new at this vibration sensation and another question

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Posted 10/22/2008 2:22 PM (GMT 0)
I have seen people talk about a buzzing or vibration sensation and I think I get this.  I will wake up sometimes at night or first thing in the morning and feel like there is a raceway under my skin!!!  It feels like little things are vibrating all around but you physically don't see anything, you just feel it.  It seems that I wake up feeling crappy when this happens.  Please share if this sounds like you.  I am feeling alone out here right now.  Question number two is....I have had leg weakness off and on for a month or so with burning in my feet.  I have actually had it since I had to have a blood patch for the headache I had from the spinal tap.  I am new to all this so I am guessing all that trama can cause this flare.  I am having an MRI of my lumbar/sacral spine today and then the doctor is going to decide if a round of steriods are in order.  Tell me this, will this pass in time without the steroids because I really don't want that if I dont have to have it?  Also in the past before I was diagnosed with MS, my GP would give me just a steroid shot to get me through tough times thinking it was fibromyalgia and it would work for a while.  I am also wondering if the Rebif is causing this.  I don't know it is all so confusing.  Any input is appreciated.

Cindy

Posted 10/22/2008 10:13 PM (GMT 0)
Hey Cindy

I too have this vibration. It's like a buzzing deep inside my right leg and sometimes in my core...torso. I don't have ms, but do get some of the same sort of symptoms such as this. I can tell u, as far as i know, if u have ms this is just another of those symptoms that happens and keeps u aware that ms is there. It isn't painful and as far as i understand, isn't an indicator of a flare or other such worry other than the fact that ms is there. I also have the leg weakness. It's not constant nor is it in any real pattern. My best friend has the burning feet and she does have ms. I don't know if i could say that either is related to u'r spinal tap. That would be best defined by u and u'r doc, but i'd suspect not. Again, another of those random symptoms u may have to just know is there and understand that if it doesn't hurt then it's prob ok. Do be sure to bring all this up to u'r doc at u'r next appt. Hang on friend. I know u'r frustrated with all this new stuff happening and no answers to things such as this, but try to know that with ms...and many other neurological probs....u may just have random issues that get no real explaination. Take care.
Posted 10/22/2008 10:31 PM (GMT 0)

Thanks for the reply Rhonda.  Glad to know I am not the only one out there.  I am realizing this is all part of the adjustment of MS.  Sometimes it scares the heck out of you.  I am trying to keep it all in check!  HA!  Hard to do sometimes.  Thanks again for being there with responses to all my questions. 

Have a nice evening.

Cindy

Posted 10/23/2008 1:49 AM (GMT 0)

Hey Cindy,

If this is a flare, the damage has already been done.  The steroids just make you comfortable sooner.  They do not treat or reduce the amount of damage done.  Steroids are optional.  They treat symptoms only.  Most people don't do the steroids unless they are really uncomfortable.  You can decide that for yourself.

I know you are having a tough time right now.  Hang in there.  This is a difficult disease to adjust to.  You feel like you have lost your sense of future.  I have stopped picturing my future.  I just let it come day to day, week to week and so on.  You will get used to it eventually.  Be very patient, loving and caring with you.  If your scared, or sad, or mad or whatever, let that be ok.  If you have never journaled, now might be a good time to try that.  It can be a helpful way to sort through your feelings.  Try to surround yourself with kind and gentle people.  Most people will not understand what you are going through, but good friends will try. 

Please take good care.

Posted 10/23/2008 12:27 PM (GMT 0)

Hi Gretchen,

Thanks for your response.  I have only had small flares before being diagnosed.  This is HUGE compared to what I have experienced.  I can't help but think that starting the Rebif is contributing to it.  Yesterday I felt like if the Rebif was causing some of this I wasn't going to do it.  I called MS lifeline and talked to an MS nurse and she said that the Rebif might be making the symptoms of the flare worse but is not causing the flare.  She told me to make sure I am drinking lots of water and take Tylenol 8 hr before bed on injection nights so I am covered until I get up in the morning.  She said that would help.  I had an episode when I got in the shower that made me start to shake.   I couldn't even stand the water on me.  I didn't think the shower was hot but I guess I will have it only on warm especially during something like this.  To be honest, I really don't want an infusion of steriods but this has gone on for 2 months and gotten worse.  I am ok if i am doing hardly nothing and at home.  I have been off work since last friday.  That is bad obviously money wise so I am ready to do anything to feel better.  I just hope I don't have more side effects from the steriods.  To add to the mix I woke up and where I had an injection for the MRI yesterday my arm is now all bruised.  The guy blew my vein darn it!  Just tell me I will have some good days...I will settle for some ok days at this point.  I am lucky to have a very wonderful husband who is doing a fantastic job of keeping me in check.  I thank God for his sense of humor.  Thanks for your support.

Cindy

Posted 10/24/2008 11:34 PM (GMT 0)

Hi there - its been awhile since I have posted....but here I am again.  I get the tremors too - cant really pin point it, but it feels like a vibration across my shoulders, neck, chest, etc....and it feels like it is inside, and the tremors are not visible.  I too wake up in the morning and feel crappy - that tremor feeling is present, my head is a bit spacy, etc.  But after I get up and get going, it goes away.  I notice it lots too after I lay down for a nap - I usually wake up with that vibration feeling.....but again it goes away after a bit of time

May sound crazy, but it seems to happen when I feel really tight across the neck and shoulders, so I do think that muscle spasticy has something to do with it.....

Gary

Posted 10/24/2008 11:36 PM (GMT 0)
Beau, Beau....hello!!!
Posted 3/28/2009 8:16 PM (GMT 0)
Hi Everyone. I am new to this board. I usually post on the Lyme board. I searched the site for other experiencing the vibrating feeling and really understand

Cindy's post --
I will wake up sometimes at night or first thing in the morning and feel like there is a raceway under my skin!!!
It feels like little things are vibrating all around but you physically don't see anything, you just feel it.


Has anyone figured this out?
Posted 3/28/2009 8:20 PM (GMT 0)
Another thing. Healing Spirit -- your symptoms sound a lot like Bartonella -- - one of the co-infections that can come along with Lyme disease. You can also get Bartonella from cats and various bugs. I suggest you check out the Lyme board.
Posted 3/29/2009 2:06 PM (GMT 0)

Hi Woodswalker

I have to say that the raceway sensation has been gone since I was taken off the rebif.  The rebif not only had terrible side effects but it shot my liver enzymes way up.  Now when I get that vibration feeling, it is usually from fatigue and is much milder.  I am now on Copaxone with little or no side effects.

Cindy

Posted 1/19/2012 11:12 PM (GMT 0)
Just like Woodswalker mentioned I have Lyme and Bartonella. I get the vibrating/buzzing sensations in my legs, thighs, neck, scalp, heels, calves as well.
Posted 1/22/2012 8:35 PM (GMT 0)
Hi there, wow this thread is three years old and still getting posts...rather cool actually...

I do not get the vibration near as often as I use to, but still do get them....actually until I read this post again I even forgot about them

Have a nice day everyone

Gary

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