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  • Autonomic Nervous System disorder or something else? PLEASE HELP ME...

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    Old 01-02-2007, 09:11 AM   #1
    rachelpass
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    Unhappy Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    Hi all i have the following symptoms, and i don't know what they could be, can anyone here help me figure this out. My doctor as well as the neurologist and the cardiologist are stumped.. see list below.. if i went into detail it would be a book, so i am just listing the list of symptoms

    Amy's Symptoms:
    Eye Twitching
    slurred speech/stuttering
    leg and arm neuropathy
    palpitations
    fatigue
    short of breath
    gait abnormalities
    arm swing disfunction
    dizziness
    syncope
    light headed
    high blood pressure
    supine low blood pressure
    vasovagal syncope
    blurry vision
    frequent bowelmovements right after meals
    low B12, treated with injections monthly

    Any one have any idea of what may be going on? i would appreciate any and all input. current medications: benazapril, allegra 180, nasonex, klonopin 1/2 tablet every other day

     
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    Old 01-03-2007, 05:49 AM   #2
    feelbad
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    A possible dysfunction could be likely considering your ongoing symptoms.but you also could have something that is actually triggering the symptoms such as a problem within the c spine which can also affect the sympathetic nervous system.the sympathetic ganglion which controls the SNS is actually located within the front,kinda to the side slightly,in your L neck.the sympathetic chain tho actually runs down along both sides(on the outside) of the spinal column as well.I have SNS damage that was caused by a spinal cord sugery that just really messed up alot of things.

    what types of actual testing have you had done?any MRI on the c spine area at all?anything on the brain as well?if you could just let me know that part,it would really help alot in order to give you the best possible advice.what exactly have you been told by the specialists you have been seeing regarding the actual symptoms?thanks,**
    __________________
    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 01-03-2007, 03:41 PM   #3
    rachelpass
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    hi i had mri on cspine and lspine due to motor vehicle accident in 2005 it showed disk buldge and early degeneration... doctors now saying parkinsons a possibility due to skin biopsy results..i am only 28 though.. he put me on sinemet now too.. thanks for response..

     
    Old 01-04-2007, 05:36 AM   #4
    feelbad
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    parkingsons? that really doesn't fit with your actual full range of symptoms to me.have you actually gotten any sort of second opinion?your symptoms do appear to fit with some level of sympathetic affectation and possible para sympathetic too.i really would obtain a second opinion from an actual neurosurgeon and not another neurologist.Just where exactly IS that disc bulge located?do you have a copy of your MRI results in your posession?if not,get one and read thru it for yourself.most docs are notorious for not telling you everything includued in any given rad report,only what THEY feel is pertinent to your situation,trust me on that one.

    i DO think seeing an actual neurosurgeon tho vs yet another neurologist would be in your best interest at this point.they just have so much more real knowledge of the innerworkings of the c spine and the brain and the crainial nerves and the SNS and how many differnet ways it can actually be affected.even a problem within your chest cavity can affect that specific nerve that can cause SNS problems.see an NS soon,really.i seriously don't think,just looking at the symptoms you have stated here that parkingsons is realistically what you actually have.it sounds more like this doc was looking for a diagnosois rather than actually finding the real source of your symptoms to me.seriously,you should not have to be on any actual meds that you really do not even need.have you felt ANY changes in your symptoms at all since you started this med?

    taking your report and those films(very very important)to a good neurosurgeon for his opinion would honestly be what i would do if this were me,really.it honestly sounds to me,just from my experience with my SNS malfunction that you DO indeed have some level of autonomic dysfunction to both the symp and the para, possibly.this is what your actual symptoms would look like.also a real good neurosurgeon will do his own read and interpretation of your films.my NS barely even glances at the reports i bring in and prefers to just look at what the films are telling him.any actual rad report is only as good as the radiologists overall experience and knowledge actually is.this i really DO know after having 16 MRIs done over just the past four years.

    i really think the parkingson Dx is way off and just a quick way for the doc to place a label on you and move on.see that NS,soon.you do deserve a real,true dx from a doc who knows what the heck they are actually doing.did you actually ask this neurologist just why he believes you actually have parkingsons?if not,do some actual research on what parkingsons really is,all the signs and symptoms,just educate yourself well on this,and then go have an in depth chit chat with this neuologist and have him explain his reasoning to you.if you already know what parkingsons is all about,you will do really well in this little conversation and be able to counter some crap that he is trying to make you believe about your condition.this dx just doesn't sound right at all to me.

    good luck and please keep me posted,K? **
    __________________
    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 01-05-2007, 01:19 PM   #5
    rachelpass
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    Hi Feelbad thanks so much for your indepth reply i really appreciate it... I do have the MRIs in hand and they said something about C7/C8 focul buldge and the other is at L5/S1 central buldge with degeneration...

    Also i just got the Epidermal Nerve Biopsy report, where they took a skin biopsy of my thigh and calf. Here is what the results say:
    A. Calf: Skin with significantly reduced epidermal nerve fiber density, consistent with small fiber neuropathy.
    B. Thigh: Skin with significantly reduced epidermal nerve fiber density, consistant with small fiber neuropathy..

    Result values
    Calf: 3.54
    Thigh: 5.39

    Also the doctors office called me and now wants me to be seen by the Neurogenetics Doctor.. So i am to see her next on the 22nd.. They did not say why...

    Do you think that the car accident that i was in in March of 05 or the Epidural Lumbar Injections i received could have caused all of this? I also went to a chiropractor and had treatment of my back and neck for about 1 year after the accident..

    All info is appreciated..
    Thanks so much Keep in touch
    amy

     
    Old 01-06-2007, 06:48 AM   #6
    feelbad
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    the area of that bulge up in your c spine sounds kind of odd.you do not actually even have a c 8 vertebrae.you have a c 8 NERVE but no vertebrae. any bulge in that area would be a c 7 T 1 herniation,not c 7-8.i had a herniated disc in that very same spot.the thing is right where the c and t spine connect,that area,along with the c 8 nerve which can affect the wrist and hands by the way,this is kind of a 'junction' area where alot of nevre meet and cross over and the cranials that run from the head actually loop back up into the head,so your symptoms would fit more with having to do with the c spine i think than a possible parkingsons dx,really.

    just how severely is that area bulged and is it back or forward?it would state either anterior bulge or posterior.i really DO honestly think you need to take yourself and those films to a good neurosurgeon in order to obtain the best possible evaluation of your films and your symptoms.that specific area where your bulge is is just a very highly innervated area.

    it is entirely possible for an ESI injection,if it was not actually done properly,to cause more damage then you started out with.it all depends on just where that needle hit and how it was affected.when you have any problem in the c spine,it can cause a host of symptoms much further down,then add a lumbar issue and you can have affectation in just about any area of the body,even above the c spine bulge.does it appear at all to actualy touch the spinal cord itself/or have you not taken a good look at those films yourself?

    all in all,getting to the neurosugeon i think would give you the best answers the quickest way.i am just kind of suprised that these docs have not actually referred you already.espescially as you say they are all 'stumped'.i don't know,but it appears pretty cut and dry to me in some ways.i would seriously ask any one of your docs to refer you off to an NS as soon as possible.it will be probably a bit of a wait for that first appt but once you have been seen by the NS,the appts are much sooner.they just make you wait forever for that first one.it sucks but what are ya going to do ya know?but this is really your best next move in my opinion.you will just learn much more from this type of doc than you know now.

    if you feel that your current docs are getting you no where,you DO have a right to see someone else,at anytime.that is your decision not theirs.espescially since they have actually Dxed you with parkingsons,which honestly,i just don't see with your symptoms.this just appears to be much more nerve related,directly.

    good luck amy and keep me posted.but get thee to a good NS soon,K? **
    __________________
    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 01-07-2007, 11:26 AM   #7
    rachelpass
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    Hello FeelBad,

    Thanks again for your reply.. I appreciate you taking the time to look further into this stuff for me as i am learning a lot and i can share this with my doctors as well, as they are already stumped and looking for answers so maybe this can help. My actual Neurologist that i see now i am not so sure if he is aware of the neck injury from the car accident due to it being nearly 2 years ago and because we all thought this was caused by something else. I am in a lawsuit over this car accident and so i guess i better get on with the show as far as finding out if my illnesses now could be related cause i am sure my lawyer would really want to know...

    As far as what type of buldge i have, i am not sure if it is anterior or postior, i sure wish i had the papers in front of me but i do not. But i do know this, it was at C7, and it said that the buldge was "mildly indenting the Thecal sac" but not compressing it... not sure what that means.. And that was on the original MRIs in 2005 so i don't know if that can change or not..

    I am suppose to talk to my neurologist on monday afternoon because he is gonna talk to some folks at Mayo Clinic about what he should do next as he feels this autonomic stuff is out of his field.. when i talk to him i will bring all of this up..

    Thanks for your reply..
    IF ANYONE ELSE CAN BE OF ASSISTANCE HERE ALSO PLEASE REPLY, I CAN USE ALL THE HELP I CAN GET...
    Amy

     
    Old 01-08-2007, 08:22 AM   #8
    feelbad
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    i unfortunely dont have a lot of time here but just wanted hit the hghlights here.first of all,obtain all your medical files from every doc that has seen you along with ALL testing reports,you need this stuff just to go thru and see whats all in there,espescially the docs clinic notes which will give you a bit more insite as to what their impressions are of your actual issues.these are very important to obtain.

    next,since the bulge IS indenting the thecal sac,it IS most definitely a posterior bulge since the thecal sac overlays the spinal cord.since that test was done way back in 05,and it was actually indenting at THAT time,you most definitely need a follow up one done now.trust me,ALOT can happen to a damaged spine in just one year alone.i have had 16 MRIs over the past four years and they are almost always way different than the one i had done even just a year prior.it has been way too long and that MRI will most likely reveal a possible actual compression issue within that area to the cord itself or the area in the thecal sac could be compressed.there are just soo many possibilities here that a follow up MRI really really is needed.

    your doc is right that this stuff is wayyy over his head.going to actually see a real neurosurgeon at the mayo would really really be what you need to do right now,of course along with the follow up MRI.but that really does need to be done soon.please keep me posted Amy,K? hang in there.**
    __________________
    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 01-14-2007, 06:30 PM   #9
    rachelpass
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    Feel Bad thanks for the reply. sorry for my delay in getting back to you.. i have been in the hospital for 6 days for back pain, of unknown cause.. i had severe pain (worst in my life) in my lumbar spine and right hip and leg and was admitted for pain control. they repeated my lumber MRI and said no changes were noted since the last.. can this autonomic stuff be dangerous? and is the Cervical stuff that might cause it fixable? thanks again for your time Amy

     
    Old 01-19-2007, 12:21 PM   #10
    ibtouchy45
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    did you get her blood tested for lead? Home pathogens? Good luck, God bless her.

     
    Old 01-23-2007, 09:33 AM   #11
    rachelpass
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    Bump for more answers to original post please....

     
    Old 01-31-2007, 05:07 AM   #12
    rachelpass
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    Re: Autonomic Nervous System disorder or something else? PLEASE HELP ME...

    bump to top

     
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