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  • Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

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    Old 01-25-2007, 07:27 AM   #1
    rachelpass
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    Red face Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Hello i am having many health problems and i do not know where to turn. Even the doctors are scratching their heads now.. I have listed all my symptoms below.. please offer any help or tell me where i should turn for help.. Thanks so much in advance.. all this is becoming progressive each day, and new symptoms are appearing..

    dizziness/lightheaded-daily
    blurry vision- frequent
    difficult seeing @ night or in dark places- daily
    electric type pain in head with quick movements or reactions- frequent
    dry mouth- frequent
    trouble with swallowing- frequent
    coughing- comes and goes with other symptoms- almost daily
    shortness of breath- daily
    palpitations- daily
    chest pain- frequent
    early fullness @ meals- daily
    frequent bowel movements- daily
    constipation- daily
    abdominal pain- frequent
    urinary retention- noted on post void residuals
    urinary frequency- frequent
    abnormal sensation in back, arms, legs, feet, and neck- frequent
    numbness and tinging in legs/arms/feet- daily
    flank pain- frequent
    left arm swing reduced- daily
    blood pressure unstable-daily
    reduced sweating- frequent
    exercise intolerance- get cold instead of hot and sweaty
    shaking hands- occasionally
    clumsiness-frequent
    problems walking- balance issues, bumping into stuff, tripping- daily
    ill feeling spells- frequent
    can not sit/stand for long periods- frequent
    fatigue- frequent

    History:

    cervical and lumbar disc bulges, and annular tears, DDD- MVA 2005
    anaphylacti shock- twice in 2005 due to allergy shots
    frequent sinus infections
    high blood pressure
    orthostatic hypotension-mild
    vasovagal syncope
    low potassium
    hsv hepatitis
    mono
    epstein barr virus
    elevated AST/ALT liver enzymes
    epidural lumbar steriod injections x 3
    low B-12
    drop foot
    foot hypersensitivity
    immobility- twice in one year, once lasted 1 month once for 1 week
    chronic back pain
    cogwheel rigidity
    small fiber neuropathy as noted on skin biopsies

    I am 28 years old and i want to live a normal life.. i want to feel better and i do not know where to turn for help.. any help would be greatly appreciated...

     
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    Old 01-26-2007, 07:22 AM   #2
    6foot3
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    rachelpass......you said even the doctors are scratching their heads so before i can TRY to offer my thoughts on all your symptoms my question is What type of Doctors have you've seen and what tests have been done......
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    Last edited by 6foot3; 01-26-2007 at 10:05 AM.

     
    Old 01-26-2007, 07:39 AM   #3
    rachelpass
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Hi 6foot3,

    I have seen my internal medicine doc, and a few neurologists for most stuff
    an orthopedic surgeon and pain management doc for my back stuff..

    I have had the following tests:
    Head-up Tilt Table Test
    EMG/Nerve Conduction Studies
    Evoked potentials
    Punch skin biopsy (Epidermal Nerve Biopsy)
    Brain MRI
    Lumbar MRI
    Head CT
    Echo
    EKG

    that is all i believe...

     
    Old 01-26-2007, 07:40 AM   #4
    rachelpass
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    oh, and i received 3 Lumbar Epidural Injections

     
    Old 01-26-2007, 10:08 AM   #5
    6foot3
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Ok..Then the second question now is did they do any blood work??And what was their thoughts on the EMG/NCV tests. No neuropathies ? And did they look for MS lesions in the MRI's ?? thanks !!
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    Old 01-26-2007, 11:45 AM   #6
    rachelpass
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    hi,

    they did some blood work last year when i was in hospital like for B12, etc.. my b12 was low at that time and so i have been receiving monthly injections for that..
    they also did a spinal tap
    they did not think it was MS..
    EMG was normal
    NCV was abnormal slightly
    Nerve Biopsies came back abnormal and said: Significant Small Fiber loss indicating a Small Fiber Neuropathy..

     
    Old 01-27-2007, 08:08 AM   #7
    6foot3
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Last questions and thoughts are what did they say about the Spinal Tap. There are about seven different peramaters they check for (protein count,wbc,rbc,glucose,gamma globulins,color,pressure etc) also is there any muscle weakness?

    Here's what i would do since your not getting the answers you need from your physicians and that is if you live in North America i would seek out an MDA clinic (mda.org) thats the Muscular Dystrophy Association. They specialize in 43 neuro muscular diseases and not just muscles but nerve diseases also. You can find the closest center and telephone numbers at their site and all their research and diseases that they are fighting. I'm sure they can guide you best as to what to do but i'm still curious as to your answers on the spinal fluid readings....
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    Old 01-27-2007, 11:08 AM   #8
    nov27,1987
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Heloo, I'm sorry for your pain. Try Googling "Arachnoiditis". You will find that many of these symptoms ar covered under this disease. I have this disease and have many of the problems you discribe plus more. I'm now treated by a Pain Magement Specialist with a Medtronics Pump. I have been able to control almost all of my symptoms to atleast a bareable level. The one I am most concerned about and have not been able to find any relief for is the neuropathic pain I have in my legs and feet.

    Good luck

    Michael

     
    Old 01-29-2007, 06:41 AM   #9
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    From all you've posted so far, why do you think you have autonomic issues? Constipation can come with so many of the meds one is on in treating neuropathy pains, that, combined with a lack of activity [as much as we'd like to] ,and ,that even tho we may thinkwe eat right, we usually take the easiest OUT in way of nukem-or open-the-pack foods, the things least good for us.

    Check out the [url]www.Neuroexam.org[/url] for what neuros check for and why...then [url]www.LizaJane.org[/url] for a list of charts put together by a PN sufferer who went thru the whole magilla with spinal and auto-immune testing...others have also contributed to the 'lists' as more issues get into the 'mix'.

    To fill out your own 'charts & history' you will need to get copies of all your tests...blood and otherwise to fill in the many blanks. Keep in mind always, that such tools are just that...TOOLS and not an end-all or be-all. IF a patient were to say HERE why haven't you done THESE tests? any sane doc would write you off as, well, 'emotional'. BUT if you present parts of all you have and say...here, I believe I've gotten THIS down so far...there are or are there other things? that could be done? That should get the doctor juices going in constructive directions. Honey, even during frustration, gets lots more flies than browbeating. Docs are human, at least good ones are, just like us.

    I hope this helps! And, keep us up to date.

     
    Old 02-05-2007, 06:10 PM   #10
    rachelpass
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    bump to top

     
    Old 02-05-2007, 09:33 PM   #11
    PearlDoves
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    You had mentioned your cervical spine as well with a bulge, so I'm guessing you had an MRI of it? Did your ortho recommend surgery? Some of your symptoms may subside if that is done.

    your blood pressue and potentially your urination problems can be related to your spine problem. Do you notice if you have jumpy relfexes sometimes when you see the doctor? If so you could have Hyperreflexia. I can't remember all the technicalities of how this goes, but roughly what happens is when your bladder and bowel gets full and when you have some kind of spinal stenosis, signals that travel to the brain that you need get cut off, so then people start having problems and many times the high blood pressure is because the bladder and/or bowel is full and you may not realize it is because of that signal loss. The high blood pressure could cause you to stroke. Often after the person "goes" the blood pressure will go back down. I think a lot of the time a person can or will end up loosing bladder control because of signal.

    But bladder problems in themselves whether it be retention or frequently haveing to go can be due to spinal problems. If your ortho hasn't talked about surgery with you yet, you may want to consider another opinon either by another ortho or a neurosurgeon, just be sure they are good spinal docs in either case or at least mention to the one you have with what I'm about to say: Reason I say this is because even if the surgeon doesn't think that your spinal problems are that bad right now, if you have slippage of your vertebra going on as well (which may not always get picked up on an MRI -believe me I know!) it could be futher contributing to the sevarity of your problems and making them worse than what they may seem on the films.

    The other things I wanted to ask is if you are on any medications. Part of me wonders if some of your problems could be symptomatic of hypersensitivity to them.


    Good luck to you and many blessings, I hope things get figured out for you soon so that you can have a normal life again, I feel the same you.

     
    Old 02-05-2007, 09:36 PM   #12
    PearlDoves
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Also the trouble with swallowing can be related to your cervical spine issue. I am very familiar with this as well. I had an endosocpy and a video swallow study done and nothing showed up. Years later I read my orginal report from my car accident from and found out I had possible vertebra splipage going on around C2 - C3... that explains it more than anything to me. But your situation could also be very different and it may not hurt to explore or do those tests to rule them out.

    Last edited by PearlDoves; 02-05-2007 at 09:41 PM.

     
    Old 02-07-2007, 09:12 AM   #13
    dahlek
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Two things are sort of standing out ...to me....
    One is to actually GET copies of your tests and blood work, also anthing written that goes along w/your scans and MRI's...Sounds like you will probably find out LOTS of what-all is going on in all the tech talk that will give you 'key words' as to what these DOCS think your problems are...Also, I agree with what others have said about getting second opinions. Second opinons are CHEAP compared to continued suffering...It was one of those 'second opinion' quests that I'd found a neuro who actually has tested and is really treating ME! I truly wish I'd gotten smarter sooner and received the help needed before some permanent damage was done.

    Two is your comment about 'seeing some neuros'...why were you soo aloof in this quarter? Did these docs sort of discount your problems in some way? If you live near a major metro city/area, you will probably get to choose from neuros in at LEAST 5 relatively accessable practices...about 20-40 docs? Surely there is someone there who can help put it all together! Neuro issues are many, difficult to diagnose and usually sort of squirrelley in the symptoms. There are lots of 'If's, But's, and However's' attached to any diagnosis..
    \
    Please ask for and get those report copies! Just read it [or try to] and look for the *asterisks*** and read the notes on the last page...I bet once you start to 'web' up all it all MEANS, you might just have a better handle on what's going on. The stress of not knowing what's happening is, at times, WORSE than the actual happenings. Really, sit down with a list of questions to ask each of your docs....until you get things clearer in your mind. It's YOUR turn to keep others 'waiting' in that waiting room! Why do you think that the time you are supposed to see your doc and the time you actually see your docs...differ? IT REALLY IS YOUR TURN!

    Super good thoughts, and keep us updated! Please?

     
    Old 02-08-2007, 05:03 AM   #14
    rachelpass
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    hi all it is me Rachelpass.. I thank you all for your advise and input..

    Here is what i know now.. i do have a small fiber autonomic neuropathy and my current neurologist (one that actaully seems to know what he is talking about) says that it is a progressive condition and that could be the reason of all my problems. He said it is most likely Autosomal Recessive in nature.. He is trying to get me enrolled in a Study with the NIH.. but i am having to wait on all the legsitics, etc.. I think if i do not get accepted into the study then i will just have him Refer me to the Mayo Clinic or somewhere like the Cleaveland Clinic.. i just really want to feel better..

    Also about the spinal issues. I was told by my orthopedic docs that the disc buldges do not need surgery. They said they don't do surgery on stuff like that.. So i continue to see pain management for those issues and i may see if they will do some more epidural steriod injections or some facet blocks for that pain.. But no one really wants to say that my back issues are related to any of my other issues..

    Also i have had high blood pressure for several years before the car accident, so i am not sure if those are related or not...

    I am about at wits end and don't know what to do next.. i guess i just let the experts handle it all...

    Have a nice day.. i will try to update as time allows..
    Amy

     
    Old 02-08-2007, 11:58 PM   #15
    PearlDoves
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    Re: Autonomic Nervous System Disorder or Neurological Disorder? Please Help!!

    Have you been to a cardiologist or your primary then for your blood pressure? You should perhaps think about getting on some medication if you are not already as this can be truely dangerous.

    Sometimes with back issues, I've heard that the disc themselves can cause pain, in which a discogram can help have the pain realized and where the pain is exactly coming from and it also gives a better look at those discs. If you haven't gotten recent films of where those bulges are, you may want to ask for them to be done again, as things can change. I still say you may want a second opinon about the buldges and the pain by going to another couple of different neurosurgeons or orthosurgeons, to see what thier ideas are on the issue. Seeing a "surgeon" doesn't mean that he/she will rush you off to surgery, they can help manage pain as well.

    If you are at your wits end and you are ready to give up and just let the doctors handle you any way in which the wind blows, that might be a signal for you to start fighting for yourself, otherwise you can risk slumping into depression. Sometimes you have to be persistant and investigate. I know it can get very frustrating, and its okay to take a rest from it for a while every so often, but do this in mind with an intention of jumping back in to get to the bottom of this because you are worth it! You're not alone in your struggles, so many people get frustrated with thier conditions as you have. Become a fighter for yourself and do your best to find the answers.

    Many blessings to you, keep us posted!

    Last edited by PearlDoves; 02-09-2007 at 12:00 AM.

     
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