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Autonomic Dysfunction ( Rare Disease Day )



  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 03/04/2016 - 10:03 AM
    Yea the standard medical community is just not equipped to deal with these types of problems, they are not trained for it and unfortunately the patient just seems crazy in their eyes, hell the patient even feels crazy cause your body is literally malfunctioning on you.  But the doctor needs to lose the guilty before proven innocent attitude and get them to he right person or next step.  If you want a patient to love you for life, than just believe them and let them know you are on their side until we find the issue.  I am appalled, early on you long for one doctor to help you.  The bright side is several big hospitals are opening or have opened POTS centers and autonomic dysfunction is being realized by some as a very big problem.  
    EDS is another bad one, all these come with so many health things to fight its overwhelming.  I'm sorry for you girls and hope something comes one day that helps them.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thanks Itsautonomic. Unfortunately we had confirmation last Friday that my darling six year old grandson has EDS as well. Life is very hard. We are a close knit family. We will do our best to make the best of everything that life has thrown at us. Many are dealing with everything by themselves. For that I am thankful. 
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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Jill I hate to hear that, poor little dude shouldn't have to face challenges like that so young.  Do they think it's a genetic component causing it in the cases in your family?  Again I am sorry and sad to hear this news and this is one of those times you hope the doctors are wrong.  
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Yes, there seems to a genetic thing going on here. It was a geneticist who diagnosed him. With the hypermobility type they have only just discovered a genetic marker. I'm pretty sure my mother and brother had it as well as my father-in-law. He was not sure about me. People are funny about illness and the family won't discuss it. A cousins daughter has a chronic condition which sounds very similar to my daughters. No one is willing  to talk about the connection. You can lead a horse to water ..........
  • First of all let me say how very sorry I am for all that you are going through and when dealing with loved ones that has to be the most difficult experience of all. I pray you and your loved ones find answers and help.

    This is not probably the right place to post my questions but since all of you unfortunately are dealing with these terrible diseases I was wondering if any of you would give me some info. on where I could get some information on trying to understand it at all. I just started down the road of having blood tests to see if I have any of them and find it extremely complicated and can involve so much.

    One blood test came back with: some Anti-Nuclear Antibody (ANA with reflex) results for the should be are not, where results are Positive they should be negative. I am lost so if you can direct me to some info. that could at least help me to understand any of this I would appreciate it so much. I just have not felt good with other issues so my GP and Neurologist thinking I might have one both took blood tests no Lupus yeah but am wondering why not further testing so trying to learn about it.

    Once again this is about your loved ones and you not about me and I am  after reading several things about some of it, that you are dealing with it was a real eye opener for me. Since coming to this Forum I was ignorant of all the things and still am so so much of what can go on with the human body.

    Please take care Sherri

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  • Hi Sherri I have private messaged you. Hope it helps.
  • Hi I probably goofed I am not supposed to ask for web-sites etc. so sorry don't want to break rules this old brain really I swear those steroids are making my memory and thought process crazy.

    Thanks Sherri

  • I have POTS and OH (orthostatic hypotension) from spinal cord compression.  I have a bunch of other autonomic stuff that goes with it (gastroparesis, etc), but it is mostly mild.  I am very grateful that my POTS is mostly controlled by meds, and I'm doing even better since they added florinef to bring up my blood pressure - there were many mornings my diastolic would not come out of the 50's, and I was just so darned tired.

    Being on support groups, I can't imagine having the severe form.  I'm a "lucky" one.

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    I agree, I have 3/10 scale for autonomic testing dysfunction and I know if a person is up in the 8/9 range they usually are bedridden and 10/10 is complete autonomic failure and most life threatening.  I know all the issues I deal with and its on the lower side, luckily I do not have POTS though mine is another type of autonomic dysfunction from spinal cord damage.
    TWynnB, I am really intersested in your story.  Did the doctors relate the spinal cord compression as the cause pretty fast ?  I have found most doctors do not know much about autonomic issues and even less after spinal cord injury, yet being on spinal cord injury forums I would say the majority suffer autonomic issues after.  I know POTS your blood pressure is a big flag, but I didnt have that and had to go through the QSART and sweat testing to find mine was messed up.  Circulation seems to be one of my larger issues and severe pain.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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