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Im vibrating!
Sep 28, 2009
Hello, (Im new here.)

Brief history of my MS: I lost the vision in my right eye early October 2007. I was diagnosed with Right Eye Optic Neuritis. I had an MRI soon after...and it showed suspicious lesions...which indicated that I had MS. I was diagnosed with MS late October 2007 (On my 19th birthday!!). I've also experienced numbness on my face and on the right side of my body.

Medication...I started off with Avonex once a week. I was on Avonex for 7 months until I couldn't take it any more. The side effects were too much. Then I was on Rebif...same story couldnt handle it.

Currently I've been off medication for almost 9 months...I had my most recent MRI last week and am waiting for the results.

Recently for the past 3 weeks...I've been feeling weird vibrations throughout my body. They dont hurt but feel like a weird buzzing. I notice it more when I bend my neck down. Would this mean I have a new lesion? Does it go away? Any replies would be helpful.
Thanks
-416
Re: Im vibrating!
Sep 28, 2009
Hi there. Sorry to hear your story. Buzzing can be a new lesion, or attack, or it can be residual from the last ones...your MRI will be very telling. Also, there is a condition which hits alot of MSers called L'Hermittes which sounds alot like what you describe and usually lasts a few weeks and comes and goes. When you bend your neck down (chin down) does that shoot pains and vibrations down your spine? You might want to read more on L'Hermittes syndrome.

You do know that Avonex and Rebif are the same drug, right? And, Rebif is actually stronger...if you had problems with Avonex its not at all surprising that Rebif was harder for you....but, what surprises me is you didnt hang in there. The side effects stop right about the time you gave up. Usually, its 6-7 months from your first shot. The actual side effects shouldnt have even started until you titrated up to the full dose (which takes a month with rebif) and then from there, last 6-7 months. There are so many things you can do to keep from having those side effects and once they stop, they never come back...
So, now you are med free and having symtoms. Do you have a plan if your new MRi shows more lesions? Its highly possible that the symtoms you are having now are the result of new lesions, which would be from being med free...Meds dont start working for 6 months after you start them. It takes that long to build up in your blood stream....and of course, there is no guarantee that they will work- they dont work for everyone, but for 85% of us who are on DMDs, we do not experience new attacks...I hope that you have a plan if in fact you are having an attack, or discover new lesions with this MRI.

Hang in there...the buzzing will stop sooner or later. Like most things with MS, all symptoms come and go.
Let us know what the MRI shows..
Nikki
Re: Im vibrating!
Sep 28, 2009
Hello, 416.

Vibrations/buzzing are perfectly normal abnormal sensations when having MS. Vibrations/buzzing are known as a sensory symptom.

If you can bend your neck down and can induce the buzzing/vibrations this is called L'Hermittes.

L'Hermittes is not exclusive to MS but when you have MS L'Hermittes is caused by a lesion(s) in the cervical spine.

Will your vibrations go away? Like with everything related to MS - it depends on the individual persons MS. For some these sensations go away, for some it comes and goes and for others it's just a normal symptom you get used to.
Re: Im vibrating!
Sep 29, 2009
Hello, All. I got my DX due to extreme L'Hermitte's. They never found a spinal lesion, but I no longer care what they can or cannot see. I deal with it, NBD.
To original poster: I still have the numbness when I bend my neck forward, but after 6 years I really don't notice it. The BUZZING, however (for me it was like a cat's purr living at the base of my spine, used to keep me awake at night!) has gone away. Hang in there. It will likely subside, might go away altogether.
Re: Im vibrating!
Sep 30, 2009
There might be some confusion.

You can have vibrations/buzzing and NOT have L'Hermittes. Having these sensations are normal in MS.

L'Hermittes is the ability to make these sensations happen "on command" even when they where not present before bending your neck down. Vibrations/buzzing, electrical shocks/zapping only last a second but can be repeated as many times as you bend your neck.

Sometimes a cause cannot be found. As I said before there are other causes to L'Hermittes and is not exclusive to MS.

If you have MS and if you have L'Hermittes it is caused by cervical spine lesions, sometimes it can take awhile for those lesions to show but, unfortunately, they will.

I was diagnosed without lesions. Because I was presenting with L'Hermittes and other symptoms indicating cervical spine involvement my neuro told me MS was attacking My cervical spine even though there was not any proof via the MRI. He was correct. It took quite a few years for those cervical spine lesions to show but they did...I have numerous and only 2 brain lesions even after 24 years.
Re: Im vibrating!
Sep 30, 2009
[I][CENTER]L'Hermittes is the ability to make these sensations happen "on command" even when they where not present before bending your neck down. Vibrations/buzzing, electrical shocks/zapping only last a second but can be repeated as many times as you bend your neck.[/CENTER][/I]
Thats exactly what happens to me! And, it was happening long before my diagnosis- however I still, after 4 years and bi-yearly MRIs do not have any spinal lesions.....and my doctors still insist that its L"Hermittes. I dont know....Im reading things that definately suggest that this can happen with lesions in certain areas of the brain as well- it is all the central nervous system afterall.
Just thinking out loud- not trying to argue a point- but this condition is very interesting....and thank goodness, not the end of the world!
N





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