regarding vibration sensations

[dowma]

I'm a new comer to your forum, although I have previously posted in neuro forum and gave my history.  To make a long story short, all my testing thus far have been normal, it's been a year now since my symptoms have started (numbness, tingling legs and arms, feeling of mental "fogginess", extreme fatigue, heavy sensation in arms and legs, some mild blurred vision, and difficulty with retaining information.  
But I wanted to ask those of you already diagnosed with MS about the strange vibratory sensations I have been having in my arms and legs.  It is as if my cell phone is on vibrate or my pager is on vibrate.  It startles me sometimes especially when I realize it is not being caused by anything external.  Is this fairly common?  What does it mean?  Does it awaken any of you from sleep, or do you have difficulty sleeping because of it?  
As I mentioned it has been just shy one 1 year since my symptoms all started, I am trying really hard to be patient because all my diagnostic testing has thus far been negative (MRI brain, C-spine) extensive labs, EMG: negative, spinal tap 3 months after symptoms started.  I did have an EEG which was abnormal then went for 5 day VEEG which was abnormal also, no seizure disorder but decrease theta waves and some cortical hyperexcitabililty in the parietal region.  I don't suffer from migraines, have been told possibly "white matter disease"  I am having reapeat brain MRI and C-spine it has been 6 months and more since prior fims. I am having them on a 3 tesla which is the newer machine.  Thanks for listening.  
dowma

[Janey1]

Hello,
This is my first message to this forum.  I have not asked any questions as yet as saving them for when I get my results from vep and mir.  I too have been experiencing extremely similar symptons to yours  (apart from the fatigue, vision problems).  I have had some limited heaviness in limgs, but more importantly it is the sense of 'vibrations' that is literally driving me mad.  I have cried myself to sleep lots of times, due to being scared as do not know what is wrong with me.  I have hadto stop going to the gym and can not even walk very fast, as it seems my legs go weak (I call it 'confused' leg syndrome :-) ).  I do stretch on daily basis and still go swimming and hope to keep it that way.  I have had my vep test today and mri in 3 weeks time.  Have had a couple of good weeks now, only v little vibration.  What I find most frustrating I am doing  some exams (did one about a month ago) and I found it difficult to write, it seemed my arm was going to go into a smasm, but it never went.  ~I am also excperiencing a very strong pulsating sense in my neck and torso asd well as the vibrations sense.  Does this sound to anyone like ms symptoms? Many thanks for any ideas  Janey1

[T-lynn]

The few days of steroids may slow down the heaviness and numbness they help with inflamation.Your neuro may think you are starting to flair up.

Steroids are not my favorite at this point in my MS life,but I will admitt the first round I had in March whipped the relapse right out of me.This last dose I have not fared so well,but I'm not for sure if its the steroids or the attack,could be a combo of the both and having 2 severe attacks back to back.

2 days aren't bad,I had them for 5 days straight both times.Oral prednisone won't do much on an attack,they help with the taper down.

When resting,the muscles and nerves seem to be more noticeable,it could be rest limbs syndrome.I know that I have had nights that nothing seems to want to rest.talk to your DR there are mild meds to help.

[angelsoso]

I am having the same problem and it's very frustrating.  I have been going back and forth with my neurologist because I don't understand the heavyness I feel in my legs when I go to sleep.  He said there was a small plaque on the tip of my spine so he gave me 10 days of prednisone.  And it did not work it only made matters worse.  The heavyness is heavier and the numb feeling is worse.  He thinks I need to get stronger dose of the steriods so he wants to prescribe to days of injectable steriods and of course I am against that.  I just don't understand why the root of my problem becomes severe when I am resting.

[dowma]

Thanks for your advice, the sleep study will be attended.  Your right OSA can cause cognitive problems.  I don't believe I have restless leg syndrome because it occurs throughout the day as well as other sensory issues with both my legs and arms (numbness and tingling, pain sense of heavyness).  This is a different sensation then feeling as if I can't keep my legs still, needing to constantly move them (I'm familiar with RLS) I actually moved up my MRI and had it yesterday.  I am fortunate that I work in the hospital where it was taken so I listened to the dicatation today.  I was really hoping that this would be it and i would finally have some concrete evidence backing all my symptoms but no.  I felt so physically awful yesterday which is why I moved up the MRI w/wo contrast of brain and c-spine, and it was "no change from prior ~6months ago.  few scattered lesions in white matter which he believed actually showed improvement when compared to prior films.  I don't know what to think anymore, maybe its muscular I am at my wits end.  I really hope that the MEG will tell more!  I really do appreciate all your feedback, please if you have any other suggestions.  dowma

[zenminded]

I empathize with the frustration that you feel!  I am a registered sleep tech (RPSGT) and was also diagnosed with MS in 1998.  I just wanted to throw my two cents in and encourage you to get an attended sleep study.  Fragmented sleep and/or sleep disordered breathing could be at the root of many of the symptoms that you have described.  The vibrations that you are feeling could be due to Restless Leg Syndrome (RLS) and something like Obstructive Sleep Apnea (OSA) would cause memory problems, fatigue and the reason why you have decreased theta activity in your EEG.

In any case, it couldn't hurt!  Good luck!

[dowma]

Thanks for the information.  The other strange thing to me is how variable I feel from day to day.  I could have 2-3 good days where I am not having so much pain, vibratory sensations and fatigue, then the next day symptoms are back just as bad if not worse.  I think my symptoms have worsened slightly over the last several months especially the fatigue.  I have tried to be very conscious of all my symptoms when they occur, where, and how I am feeling emotionally.  Some days the heat bothers me worse than others.
I am have the MRI of the brain on 7/9. Then I'm having a MEG and neuropsych.eval at NYU on the 23rd, then possibly a sleep study.  I hope to god as crazy as it sounds that something shows.  I can't take much more of this.  I also started taking an antidepressant to help maintain my mood.  My mental fogginess and difficulty retaining information really worries me, I have a very big exam a certification exam for my licsence and not sure how I am going to prepare.  I'm glad your back and hope you continue to feel well.
Dowma