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

[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

[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......

[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

[angelsoso]

If it makes you feel any better I just had a baby boy 8 months ago and MS had no negative effect on my pregnancy.  I must say that was the best year of my life since I was diagnosed.  I was off the medication for the entire pregnancy and I had no symtoms at all.  I felt like I could run a marathon, my neurologist said that there are certain hormones and the protein level in pregnancy that really combats MS symptoms.  He was ever so right because I was off medication and no symptoms at all.  The only downside to that is that your relapse rate is higher post pregnancy so you will have to start back on the medication as soon as you deliver so you will not be able to breast feed.  I breast fed for a month then I started my medication.  

[Bumpasmom]

I have heard women do not have symptoms during pregnancy, if I were younger I would get pregnant just to experience these feelings going away, even if only for 9 months!

[dowma]

Thanks for the advice about steroids, you mentioned you have MS and that it helped with feeling of heaviness.  Unfortunately I do not have any diagnosis so meds haven't even been mentioned.  All my testing thus far for MS has been negative.  Its so frustrating especially when you don't feel well.  The only abnormality was my EEG.  I will be having a MEG scan and a neuropsych. eval on Monday so maybe that will show something... My 5 day VEEG didn't show any seizure acitivity but some abnormal brain wave activity.  the MD doesn't think that it coorelates with my physical presentation.  What is most frustrating is that everything I read about MS i seem to fit the profile but none of my testing is leaning in that direction.  Sorry to be redundant, just at loose ends.  I wish I could just have a diagnosis and be on with it and deal with whatever comes next.  Thanks for listening and the advice.  I have started to keep a time-line as suggested by Quix, I carry a little notepad and jot my symptoms so I  can keep track.  When it comes to for another consult at least I will have that to referrence.  dowma( Mary Beth)

[dowma]

Sorry I didn't reply but thanks for the re-assurance.  Regarding the vibration symptoms.  Luckily they have seem to subside a bit, but who knows what tomorrow will bring.  dowma