Aa
regarding vibration sensations
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
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
Welcome to the forum. I think you will find yourself in good company here. You have pretty much the same symptoms I have, and yes, I have the vibrating sensation as well. I am also struggling to get a diagnosis. Don't feel alone or crazy. These things are just really hard to diagnose. Please read my previous postings when you are up to it. I don't have enough energy to retype my long history and symptoms, but you might find some of the information helpful. Keep your chin up, and let us know if you need anything!
Jenn
Jenn
I can relate to the the vibrating sensation.
I do have a Dx of MS.
My neuro explained that the vibrating sensation is the nerves being over excited and they are not getting the message from the brain to relax,especially after a long day.
Certain medications can cause the vibrations to become worse.For me its steroids.
Try some mild stretching,more of a gentle stretching before bedtime,sometimes this does help and relaxes the nerves and muscles.
I do have a Dx of MS.
My neuro explained that the vibrating sensation is the nerves being over excited and they are not getting the message from the brain to relax,especially after a long day.
Certain medications can cause the vibrations to become worse.For me its steroids.
Try some mild stretching,more of a gentle stretching before bedtime,sometimes this does help and relaxes the nerves and muscles.
I'm back. I was unhappier away than coping here. I'll let you guys deal with the "black hole" if he resurfaces.
I didn't understand the "vibrating" thing for a long time. But, I've been reading the two neurology forums for a few months now and it's a common complaint. I think it is a form of paresthesia. If you think about it, there is a different sensation (paresthesia) for each nerve ending type. There are several different types of sensory nerves. One is specific for pain. Another for light touch. Other transmit pressure, temperature and vibration. And people complain about all of those different abnormal sensations. T-lynn is right. All of these tend to be worse when we are fatigued.
A few people here have complained about a sensation of tightness, like a tight band constricting a limb or their chest. I thought that seemed weird, too. But in my researching for paresthesias that "band-like" sensation is well described.
Also, last month when I developed L'Hermitte's sign - when bending your neck forward causes a strong sensation down your back or down a limb - my sensation was a jiggly, jelly vibration in my left thigh.
Dowma - it has lagged far behind, but more attention is being given to the cognitive deficits in MS. And it is being noted that some people's initial presentation is with foggy brain, memory problems, emotional lability, and fatigue. You might want to consider referral for neuropsych testing. They are trained to pick up just this kind of subtle dysfunction.
When do you get the MRI's?
Quix
I didn't understand the "vibrating" thing for a long time. But, I've been reading the two neurology forums for a few months now and it's a common complaint. I think it is a form of paresthesia. If you think about it, there is a different sensation (paresthesia) for each nerve ending type. There are several different types of sensory nerves. One is specific for pain. Another for light touch. Other transmit pressure, temperature and vibration. And people complain about all of those different abnormal sensations. T-lynn is right. All of these tend to be worse when we are fatigued.
A few people here have complained about a sensation of tightness, like a tight band constricting a limb or their chest. I thought that seemed weird, too. But in my researching for paresthesias that "band-like" sensation is well described.
Also, last month when I developed L'Hermitte's sign - when bending your neck forward causes a strong sensation down your back or down a limb - my sensation was a jiggly, jelly vibration in my left thigh.
Dowma - it has lagged far behind, but more attention is being given to the cognitive deficits in MS. And it is being noted that some people's initial presentation is with foggy brain, memory problems, emotional lability, and fatigue. You might want to consider referral for neuropsych testing. They are trained to pick up just this kind of subtle dysfunction.
When do you get the MRI's?
Quix
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
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
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!
In any case, it couldn't hurt! Good luck!
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
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.
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.
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.
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
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
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
Take care, Kristin
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.
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
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
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
Take care and Have a great day!! Kristin
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......
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
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.
1 Comments
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!
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)
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
Hello,
I am definitely at wits end currently as feeling those unpleasant 'vibrations'. Actually it is so so hard to say what it actually is, I went for a swim yesterday, but certainly any kind of physical activity gets my muscles going. You guys seem to have lots and lots of tests done, whereas here in the UK things unfortunately do not move that quickly. I saw the consultant a bout 6 weeks ago and I am only just booked for brain and upper shoulders mri in 2 weeks time. It is a waiting game I totaly dispise, but there is not a lot I can do. However, general 'vibrations' or tremors in body could be felt due to lots of reasons, I am praying every day this is not ms. Take care and let of know how you are doing. Jeney1
I am definitely at wits end currently as feeling those unpleasant 'vibrations'. Actually it is so so hard to say what it actually is, I went for a swim yesterday, but certainly any kind of physical activity gets my muscles going. You guys seem to have lots and lots of tests done, whereas here in the UK things unfortunately do not move that quickly. I saw the consultant a bout 6 weeks ago and I am only just booked for brain and upper shoulders mri in 2 weeks time. It is a waiting game I totaly dispise, but there is not a lot I can do. However, general 'vibrations' or tremors in body could be felt due to lots of reasons, I am praying every day this is not ms. Take care and let of know how you are doing. Jeney1
Just a little comment about the "vibrations". I started in Jan with bilateral numbness, tingling, tremors, hot shocks, and those incessant horrible- feeling vibrations that I felt to my inner core, pretty much everywhere in my body. It started in my left hand and spread within 10 days to right hand then both legs and finally torso, head, face. ALL MRI's are negative, not even a spot. Lumbar puncture perfectly normal. EMG, Nerve conduction studies normal. All blood work (thyroid, ANA, Sed rate) normal. The neuro says "viral" is usually responsible for bilateral acute onset of CNS paresthesias. He started me on Lyrica 50mg 3 times a day, which helped turn down the volume of the symptoms, but they were still impeading drastically on my life (and my psychie). We added 60mg of Cymbalta (which they are also now using to treat nerve pain in non-depressed diabetics) and ....voila'! My symptoms have gone from a 10 to about a 2 or 1 on most days (it did take the Cymbalta about 4 weeks to fully kick in...I am on week 7 now. I told the neuro the "vibrations " or "buzzing" that I was feeling was driving me crazy...I think it was the worst of all my paresthesias. We still don't know what the cause was, what the diagnosis is....but at least for now the quality of my life has improved tremendously and I am making plans again and feeling hopeful again. So maybe that drug combination might work for someone else too. If not, keep trying. I am slowly learning that the field of neurology ( I am a Medical-surgical RN) is a very unexact science and a lot of the times they just don't know what it is!!!! Hope this has helped someone. These forums have really helped me feel I am not alone.
Sincerely,
Angela
Sincerely,
Angela
Thanks Angela, for sharing your story...I was offered to take Lyrica but was hesitant due to the side effects. I guess it can't be any worse than what I'm feeling now. Ha ha..The other reason was I didn't want to take anything was not to mask my symptoms while I was having all these tests and consults. I am really glad that its working for you and I too may possibly try that combination. thanks for the info. dowma (Mary Beth)
I have the buzzing in both feet and lower half of my calves. I also have fine hand tremors and weak, shaky legs. I am un-Dx'd and not on any meds for my Sx, except for Xanax that my neuro Rx'd me..
That's interesting about the Lyrica/Cymbalta combo ahoskrn. I'll have to look into that and ask my neuro about it.
That's interesting about the Lyrica/Cymbalta combo ahoskrn. I'll have to look into that and ask my neuro about it.
Hi! Thanks sooooo much for the info. It is really crazy that we all seam to have the same sx with no clinical signs!! It makes me think it could be something simple like a virus caused by eating fruit or something strange like that! I hope it turns out to be something like that for us all. I have been on a medrol dose pack for 4 days now and I have gotten some energy back and feel like my legs are almost normal again. It is weird, I can walk at my old pace again today for the first time in 2 months!! The vibrations or buzzing (great word! that's exactly what it feels like) are still there along with my vision problems but at least something is turning around!! I am going to research those meds to ask my neuro about it.
Ahoskm - Have you had any side effects on these two meds?
Dowma, Janey1, JonM : Hang in there and do all the research you need to before your next neuro visit so you can go in with questions and suggestions in case they do not offer anything but a "come back and see me in 3 months". I am realizing that we all need to act as our own advocates to be sure we get the help we need and deserve. It seams so easy to be dismissed when the clinical signs are not there!!
Take care and be well!
Kristin
Ahoskm - Have you had any side effects on these two meds?
Dowma, Janey1, JonM : Hang in there and do all the research you need to before your next neuro visit so you can go in with questions and suggestions in case they do not offer anything but a "come back and see me in 3 months". I am realizing that we all need to act as our own advocates to be sure we get the help we need and deserve. It seams so easy to be dismissed when the clinical signs are not there!!
Take care and be well!
Kristin
It's fascinating that this "symptom" of vibrational paresthesia gets so much interest and yet seems poorlt understood by the neuro's. Thank you, Angela, for mentioning that your neuro feels it is the effects of a viral infection. That's really interesting! Over on the reular Neuro (Patient-to-Doctor) Forum there is a thread called "Feels Like I'm Vibrating!"" It is at least 99 replies long - about the longest I;ve ever seenhere and it has to do with this very topic. You might want to go over and read some. It's currently on page #4.
Quix
Quix
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