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    Old 09-20-2006, 09:45 AM   #1
    monarog
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    Twitches, Numbness, Dizzy, Burning Tongue, Help!

    I posted earlier about my horrible, undiagnosed neurological symptoms which have been going on for 6 months now. These include, profuse twitching, transient numbness - feet, arms - moves around. Intermittent dizziness with sometimes unsteady-feeling gait. Of late, my tongue started burning and feeling thick, this now seems to be slowly improving. I have tested clean on bloodwork, EMG/NVC, Lumbar puncture, MRI's of brain and spinal cord. As mentioned earlier I had a severe cervical disc rupture 1 year ago C6/7, no surgery. My pain from this has increased with the neuro symptoms...however, they say the disc is reabsorbing, also have 2 lumbar disc bulges, which they say have no nerve impingement. Could the MRI's be missing something? I am currently starting myofascial pain treatment and accupuncture. I'm desperate and tired of feeling so horrible. Any ideas, thoughts, your experiences etc. would be appreciated. Thanks.

     
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    Old 10-02-2006, 05:01 AM   #2
    feelbad
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    hi monarog,just how severe was your rupture when it occured and how did it impact the nerves at that site and also the spinal cord?they did NO surgery on this?what does your MRI state regarding the severity of the rupture?do you have the actual MRI reports in hand in your possession?if you don't the first thing you need to do is obtain any and all copies of any testing done on you so you can read thru them for yourself.most docs will not actually tell you everything included in those reports.you need to see what they say.just from the ongoing symptoms you have stated,it sounds to me like you defintiely have some sort of damage to either the spinal nerves in that ruptured area or even spinal cord damage.are there fragments floating around in the c spine area as well or was this pretty much contained within the disc?it is very very possible to actually have symptoms in your head and facial area from damage done to certain areas of the c spine.mine are stemming from my c 8 nerve damage.marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 10-09-2006, 02:12 PM   #3
    monarog
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    Hi Marcia,
    Thanks for input. I do have reports...it was a "right paracentral to foraminal disc herniation with a small extruded component along the base of the right foramina...there is associated moderate to marked narrowing at the origin on the right c6/7 neural foramina with mass effect on the c7 nerve root." This was 13 months ago...my pain improved for about 4 months after original rupture, then got worse again, typical neck/arm...and then all the neuro symptoms started at that point, which have now been going on for 7 months. I had another MRI 6 months ago (7 months after orig rupture) which indicates posterior disc herniation. My NS says it's slowly reabsorbing so not really operable...in the mean time, I'm a wreck! So anyway, it seems it was not all contained as there was an extruded component. I also question the narrowing issue as I am at 10mm or less at the herniation site. Needless to say, I am seeking more opinions. I have been dealing with numbness, twitching, tingling, periodic gait disturbance, facial tingling, dizziness, tongue issues....I'm not kidding, it's been crazy...all of it changes around and comes and goes, but it's always something and I think the culprit is in my neck. I appreciate any input you have. Thanks for the support. Mona

     
    Old 10-11-2006, 12:55 PM   #4
    MissSunShine
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    I sympathies with you.
    I have the same problem, but have episodes of some kind, like seizures.
    I too have the above symptoms, right down to the tongue problem.....
    Except I have weakness in my extremities as well, mostly left said and effects my gait at times. My BP does seem to be messed up, it gets way too low when I lay down same with my pulse being in the 40's.
    I too have the disk problem at c 6&7, herniated and a few other spots that have degenerative arthritis bad, same with the neck. And they found an infarct in my brain stem.
    I was told............................. It is all in my head and to see a shrink. :-)
    For real.
    I do know all of this started when I got on a bunch of different antibiotics, one right after another and I got c-diff, took Flaygl and I have never been the same.

     
    Old 11-21-2006, 12:47 PM   #5
    monarog
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    My saga continues...all the symptoms that I stated in my earlier post here remain. I was spending more time on the Spinal Disorders board...however, just saw another surgeon, this time orthopedic (NS before)...says he cannot contribute all of my symptoms to my neck, though also can't explain why after 15 months since the rupture I have so much neck and arm pain. Anyway, I never feel good, ever. The worst feeling is this "plugged in" nerve feeling in my arms and legs...it is so uncomfortable, it's ALWAYS there to some degree...when it's really bad it makes my hands and sometimes legs tremor. I am always hyperreflexic when I'm checked out. I also have high blood pressure now, which I've never had before in my life; it was always low. The ortho thought I should now see a Rheumatologist, so I guess that's my next step. Sometimes when I feel so so sick, it's almost unbelievable to me that whatever is the problem it isn't just plain obvious, no such luck. This horrible nerve feeling makes me just want out of my body; it's just so awful. All my other symptoms are transient, numbness, twitching, dizziness (sometimes worse than other times), weird tongue etc. My last cervical/brain MRI's was 7 months ago...could they be missing something? I guess I'm just needing to vent...any advice and input would be great. Thanks. Mona

     
    Old 11-22-2006, 08:29 PM   #6
    TERRA157
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    You might look under Spinal Shock for your symptoms. Typically this is directed at children for Shaken Baby Syndrome, however, having surgery and all in the neck makes you a likely candidate for this to be happening.

     
    Old 11-22-2006, 10:35 PM   #7
    PearlDoves
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    Have they ever done a cat scan on your spine? this seems to add to findings that MRI's find somtimes. Maybe also flex/ext xrays views done of your neck. I dunno, part of me thinks you should see a different/new neurosurgeon, ask around for who's good out there. Its okay to see several neurosurg. docs and orthosurgeon to get differnet opinons and insight, someone might actually know what to do. An MRA of the neck and head to look at the arteries in the neck and head might be good to rule out as well. Good Luck to you and God Bless.

     
    Old 11-23-2006, 06:38 AM   #8
    feelbad
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    i do agree that you should always get a second opinion,espescially if you ever start considering surgey of some sort.

    the thing that that your doc doesn't seem to want to tell you here is that while a disc CAN reabsorb itself,the actual narrowing you have and the mass effect on that nerve root(what DOES that mass effect consist of,did they ever twll you?)will not.it sounds like you have alot of stenosis/bone spurring and that can only be fixed with surgical intervention.that will not go away on its own.it also appears that from the report and what you have stated as symptoms that there is indeed something possibly compressing or affecting a spinal tract within the cord itself.i know we have chatted on the spine board about this before,i still think this is part of your problem,along with some affectation somewhere of your sympathetic nervous system.your symptoms just fit these types of possibilities.i really dothink that that second opinion really really would help you alot to see what another neurosurgoen feels about your particular situation,believe me,all NSs do not think alike.i saw three for my cavernoma and got like three totally seperate and different thoughts on this from the three of them.it was very confusing to say the least.but the third one had the most overall experience and the knowledge thati had been looking for in an NS,so of course,i went with him for my surgery.I do think that espescially in your case,that second opinion would really be the best thing for you to do at this point.you just have some other issues besides that disc that realy do need a much closer look and that other viepoint.please let us know how things are still going mona.good luck,marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

    Last edited by feelbad; 11-23-2006 at 06:43 AM.

     
    Old 11-23-2006, 09:26 PM   #9
    monarog
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    Hi,

    I am so thankful for this board and all of your input; it is such a great support. Okay...I will try another NS to get more insight and possibly push for looking closer at the neck issues, CAT scan, maybe a flex/ext x-ray...whatever they can do to evaluate a little more. So far, they haven't been able to pin anything down and they know I have a crappy neck. Also, it is weird how all of this neuro stuff has come down 5 months after my rupture, as pain increased in my neck, arm etc...it does seem weird to me. I understand I could certainly have some other problem or disease, however; nothing has shown itself as of yet. My neck and arm kill me and the neuro stuff is ***arre and awful! Again, I so appreciate your ideas and support. After a couple of "specialists" glance at an MRI and say, "your neck couldn't possibly cause these symptoms," I start to back off and lose confidence. However, what I will say is my gut and body tell me it's stemming from there, it just feels like it. Of course, I could be wrong (wouldn't be the first time!), but you're giving me the confidence to push a little harder and I appreciate that. Thanks and will keep you posted on how things progress. Mona

     
    Old 11-24-2006, 03:17 AM   #10
    PearlDoves
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    Yep there is nothing wrong with ruling things outs, better to investigate and know that is or isn't nothing than not investigate and find later that there is. Might hurt the pocket book a bit, but I think its worth anybody's health to know rather than live with the possibility of being sorry later and being driven crazy with not knowing what is going on. Good Luck and God Bless you, I hope everything turns out well for you and that is figured out.

    have you tried any physical therapy yet? Sometimes this can help or it can make things worse. For me it started to help initially but then we found that the excersies were making things worse so I had to stop that.

    Last edited by PearlDoves; 12-01-2006 at 09:58 AM.

     
    Old 11-24-2006, 03:23 AM   #11
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    I took this post out due to not realizing before that it was violating posting rules

    Last edited by PearlDoves; 11-26-2006 at 11:07 AM.

     
    Old 11-24-2006, 05:27 AM   #12
    feelbad
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    I am really glad we could help mona,really.i DO know what its like to have the godawful neuro crap from hell and no actual explanation for it.there are just sooo many nerves within that c spine that do different things and also some of them along with the actual spinal tracts,govern like all body system functions.if you happen to also have any sort of sympathetic nervous system affectation anywhere,this could really explain alot of your ongoingsymptoms.

    seeing a new NS who has totally different experiences than your current one would honestly be your best bet here as far as actually getting anywhere.the one you are currently seeing quite honestly SHOULD be helping you to find the reasons for your ongoing symptoms,not just telling you that your c spineis not the issue and to wait for that disc to reabsorb itself.yes,in some cases that will happen,i mean its possible,but quite honestly,given the other issues you have,well,they require a totally different treatment approach that for some reason,your current doc just does not appear to even want to address for you or try and help you to deal with.

    just getting that second opinion i think will help you to see things from a totally different perspective than you are currently getting.just go into that very first appt and tell him or her that i am going crazy here and i need answers, and a doc who is willing to help me to try and do that.if you come in with that type of additude the doc will see that you are dead serious and not going to play little head games.showing them right at the get go that you are sick and tired of being yanked around by your last doc and are wanting their help will help you alot in the long run.make yourself more than just another patient.you just desrve to know whats going on inside your own body.pretty simple in theory.

    i did alot of my own "detective work" on the net just trying to find the reasons for all of the off the wall freaky crap that my body started to show after my spinal cord was injured.thats when i really found out about the spinal tracts and what theydo and how they are affected when injured.i actually have three damaged spinal tracts.when i started looking at what these tracts actually did,wow,what an eye opener it was.some of my most freaky symptoms were stemming from just the tract damage alone.the biggie here for me is mostly coming from whats called the spinothalamic tract which controls your sense of temp(i can no longer tell the difference between hot and cold or feel surfacy type of pain anymore)it is also the holder of the pain pathway that every even tiny pain signal has to go thru to reach the actual pain receptors inside the brain.since my cavernoma sat right in the middle of this tract,well the overall damage was pretty extensive.i now have what my NS called 'deranged pain signals" all of the signals that pass thru there now are all "deranged' i even will have delayed pain?when i tore the meniscus in my knee that has the RSD,i did feel some level of pain right after it but it got a bit better as the day wore on but all of the sudden,two full nights later,at 2;00 am,while sound asleep,i awoke to one hell of a nightmare of exploding pain inside my knee from that injury that happened two days before.it took that long for that particular pain signal just to finally reach the receptor inside the brain.that was the most ***arre thing i ever experienced,and i have experienced some pretty off the wall crap.unfortunetly,once your spinal cord becomes permanently injured,there are tons of secondary crap that just will hit you out of no where as a certain amount of time passes and things change inside the damaged area within the cord.i wouldn't wish this kind of hell on my worst enemy.

    sorry to ramble on there Mona.but make that appt as son as possible since it always takes like forever to actually get in to see any new specialist.you just deserve much better treatment and care from another doc who is actually trying to help his patients.hopefully you will find one of the good ones out there.as always,keep us posted.good luck,marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

    Last edited by feelbad; 11-24-2006 at 05:29 AM.

     
    Old 11-25-2006, 09:39 AM   #13
    monarog
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    Hi,

    Thanks again Marcia for the input. I am really sorry about all of the crappy neuro issues you deal with; it sounds like a nightmare! I will call about another NS appt. Initially, I did see another NS (prior to all of these neuro issues)...I had a decent feel about him. I think I'll go see him again and be very blunt and precise. There is definitely more going on here than meets my 7 month old MRI...I woke up this AM with so much neck pain and arm pain...horrible...this can't be right after 15 months from original rupture. Not to mention the ongoing weird neuro crap. The back sides of my tongue are driving me crazy! There is cranial nerve involvement for some reason and no one has been able to figure out a different disease or health problem with me - through all the bloodwork, EMG/NVC, spinal tap, brain MRI etc. etc. I need someone to listen and give further investigation to what we already know is a problematic neck! When I have someone (aka "specialist") say...no can't be the neck...I start to lose confidence; however as I said before, my gut and body are telling me differently and I have so many ***arre issues with no known cause; it's all so frustrating! I'll keep you posted how things go. Thanks. Mona

     
    Old 11-26-2006, 08:38 AM   #14
    feelbad
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    Just so you know mona,when i saw my first two NSs,they told me straight out that there was absolutelyno way that my under shoulder blade pain from hell could possibly be stemming from a cavernoma that sat under the c 8 nerve,but move ahead to the one and only NS that appeared to be the only NS who seemed to have actual real knowledge of cavs and the way the nerves actually run thu the spinal column,and lo and behold,the very FIRST thing he told me was that he felt VERY strongly that my pain was stemming from that cavernoma,and even drew me flippin pictures of how those nerves actually ran and innervated two levels below the cav.god what a total relief it was to finally have someone take this as seriously as i was.so there ya go.it all depends on the overall knowledge and experience of the doc you are seeing as to what actually IS going on.this guy was also the head of neurosurgery at the university of MN.with over thirty years of experience.i trusted what he told me.unfortunetly he just retired so now i am going to have to find a new one.god that just bums me out.

    just keep pushing it mona til you get the answers.my situation just really proves that if you really do feel something in your gut is just not right,keep pushing it til you find out what is really going on.good luck hon,keep us posted.Marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 12-02-2006, 03:05 AM   #15
    dfosnight
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    Re: Twitches, Numbness, Dizzy, Burning Tongue, Help!

    I had the same problems so I made an appointment with a neurologist. After having several tests done it turned out that I had a Vitamin B-12 deficiency.

    I now have to take 1000mg of B-12 daily. After several weeks I no longer have the burning tongue, dizziness. I still have some twitches but not as bad. The neurologist said that it will take several months to get rid of the twitches.











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