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

[dowma]

It's a relief to hear that others are going through the same frustration as myself.  Sorry to say. but I have been dealing with this for a year and feel like maybe it's something other than MS, what I'm not sure.  The MS specialist I have been to says he doesn't think I have MS that my symptoms are not typical presentation.  Not sure why, maybe because I experience bilateral symptoms I don't know.  I have been reading and reading and think maybe its inflammatory such as myositis or myopathy.  I keep you posted.  MB

[SUGAR~~]

I thas been 11 years for me!! No definite DX. I have had alot of similar symptoms, including incontinence, hearing loss and severe visual difficulties. All of the Dx's resulted in my being told it was or is related to nerve impairment. I found out yesterday that I have a spastic bladder and the urologist believes it is a component of a neurological disease. Talk about frustrated and scared. I am going to be deaf, blind and peeing my pants permanently, if someone doesn't figure out something quick!! I have also been hoarse for 2 months!!!!!!! Good Luck with everything......

[floridamom2]

Hi,  My sx started 2 months ago and from what I can tell I have had two flair ups since it started.  I too have been looking for any other answer to explain my symptoms.  I have a fusion at C3 & C4 vertebrae so I went to the chiro thinking he could maybe help everything stop.  It did not help.  I was a hyper, never stop moving kind of person two months ago and now my body starts to tremble and shake after 20-30 minutes of any exercise and I have to lay down.  I was nervous at the beginning that if I pushed myself I would be disabled tomorrow but now I am just adjusting my life to accomodate for these periods of rest.  I live in FL where it feels like 100F out most of the day so I am looking into some inside excercise equipment, low impact, to keep me moving.  I think you should try the gym, just listen to your body and don't over do it.  I also feel like my heart is gonna jumpout of my chest  and get lightheaded when I over do it.  I have read that it could mean involvement of the parasympathetic nervous system causing these.  I know what you are saying with the time issue, I have never been the most patient person and now I have no option but to wait for the next appointment and test result and just keep going.  The people on this forum have helped me stay positive and keep looking for a dx.  Keep reading and letting us know how you are, it helps me so much to know I am not going through this alone!!

Take care and Have a great day!!    Kristin

[Janey1]

I do not know much about ms in general (perhaps just dont want to know) but I have managed to speak to one free helpline, they were v helpful. I found out that diagnosis can take years and for one particular person it took up to 10 years.  
I have also experienced a very strange painless 'pulling sensation' when I bend my neck.  This apparently  could be due to trapped nerve (so I discovered trapped nerves are not always painful, but cause tingling and other sensations similar to ms).  Are you able to exercise? Do you do any? I used to go to the gym all the time, however it is causing tingling in my legs the more I do it, so have  been trying to avoid it.  But I think I should go to the gym.  I am extremely scared of being diagnosed ms (always hoping that this is not happening to me,...) We were planning to start family, however the consultant said to wait for the test results (guess it is due to the mri scans).  Have you guys experirenced any other sysmptoms? Mine have been going on for about 6-7 months now and everything is going v slowly.  GP keeps sayging there is nothing wrong and to take ibuprofen. Oh dear,... Take care Janey

[JonM]

I'm DX definte MS.  MRI, LP were positive.  I had the vibration thing going on for about a month at end of my last flair up.  I would feel this faintly in my knees when I was still or trying to go to sleep,  At the time I was on Xanax and I think that may have mads it more noticeable.  I'm off Xanax now and haven't felt these vibrations for 6 months.  I mentioned it to my MD and he said it was a fairly common transient symptom.  I suspect it will come back.  For me all these symtoms seem to run in cycles of 2-3 weeks at a time.  I'll have headaches and eye pain then my legs will feel worse with more bussing in the feet and then will shift somewhere else.  I guess thats why they call it "waxing and waining".  I hope I'm not progressive but to soon to tell.

[floridamom2]

It is like you are speaking my language.  My sx are almost identical and I have also had the issues with writing and using my hands in general to do fine motor things.  I too am waiting to try everyother thing before I get diagnosed.  All tests so far have been negative also.  I keep thinking maybe I will wake up tomorrow and it will be over and I can live a normal life again.  The vibrations and the pulsing in my torso are something I feel too.  It feels like I can feel my heart beating through me and makes my head feel full and tired.  I asked my neuro for a orla prednisone trial to stop the vibrations, I am on day three with no real help yet.   I hope you both get answers soon, as I have read this is a very hard thing to dx and it takes time and lots of tests and history to back it up.
Take care,  Kristin