I was diagnosed with Dysautonomia in 2006 by a doctor at Mayo Clinic, the diagnosis was in the back of my mind untill just the other day when I read on a wedsite that the prognosis was not go.. it said from the time of diagnosis the patient was said to have 5-7 years to live. This scared me, so I have been researching it for the past week or so and ran across this site. If anyone can tell me what their doctors told them as far as pronosis goes; that would be great.
The prognosis of a patient is generally dependent on the type of Dysautonomia they are diagnosed with. In most cases, it's not considered terminal. What kind of symptoms are you dealing with? Are you being treated? What has your doctor told you about your prognosis?
My daughter was diagnosised with a form of Dysautonomia called Neurocardiogenic syncope. There are other forms/types of Dysuatonomia. Do you know which one you have?
Have you followed up with a specific specialist (cardiologist, nuerologist, GI, etc..)since you were diagnosised?
To my knowledge on the research I did on Dysuatonomia and her condition, I don't recall coming across that information about 5-7 yrs to live. Have you been doing any form of treatments, like medicines, change of diet, exercises etc, once you found out you had Dysautonomia? You should see a Dr soon, especially if you are having symptoms that brought you to the Mayo clinic in 2006.
One of the Dr's on this board will contact you soon and help to put at ease your concerns.
Please let me know what you find out and if you have any questions/concerns, maybe I can help if you have the same form as my daughter.
POTS and NCS are likely the most common forms of Dysautonomia. Neither of these are considered terminal, and are only fatal in extraordinary circumstances such as fainting off a cliff. I can think of a couple other examples if needed.
FD and MSA are rare, and generally much more serious.
Thank you for your quick responses!. I dont know what kind of Dysautonomia I have, I'm trying to get a hold of my doctor at Mayo Clinic, but he is on vacation untill Monday. I have not seen any specialists.. untill now I thought it was nothing to be worried about. I was on a Beta Blocker in 2006 right after I was diagnosed, but I stopped taking because I felt like it wasnt doing anything and I am very fearful of medication, for some reason.
Thank you again to both of you for your help.. and the good laugh I got from the faiting off a cliff thing; that helped calm my fear a little bit!
I don't in any way want to minimize your concerns, but I think that it's rather unlikely that you would have one of the rare life-threatening forms of dysautonomia and be unaware of it. Familial dysautonomia is a condition, present since birth, which is hereditary particularly in Ashkenazi Jews. It causes very dramatic symptoms which frequently make the affected children profoundly ill. Multiple systems atrophy, on the other hand, is often seen in older adults and is also marked by severe illness. It is progressive, and it's not the kind of illness you would peg as a silent killer by any means. These are both, thankfully, rare illnesses and it is likely you have one of the many other more common forms of dysautonomia, which as halbashes pointed out, are only lethal in the sense that they might make you more accident prone.
I hope you can breathe easier now. It still is probably a good idea to pursue your medical history, even if you are not having symptoms now. Knowing what your diagnosis is can help you avoid medications/treatments which could bring back your symptoms in the future. It's always good to keep doctors informed of your diagnosis, even if you're asymptomatic at the time for this reason. Judging by the fact that you were treated with beta blockers in the past, it's likely that your diagnosis is something along the lines of neurocardiogenic syncope, inappropriate sinus tachycardia, or postural orthostatic tachycardia syndrome.
For sure get more info from doctors. I too was diagnosed with POTS, neurocardiogenic syncope, etc., and doctors wanted to leave it at that, but I just kept getting worse. It turns out most of my autonomic nerve fibers have been destroyed, which IS a big scary problem. Had this been diagnosed sooner, doctors would have more time to determine what's destroying the nerves. Beta-blockers made my symptoms worse, so I stopped as well. You probably do have something mild, but it's important to be informed in case it's not :)
Thanks again for the great feedback. I am greatly looking forward to Monday when my doctor will be back in town and at Mayos.. I have been showing more signs of the Dysautonomia lately, and I didnt think it was a big deal but now Im starting to wonder.. is trimors specific to any category of Dysautonomia or is it just one of the common symptoms?
Quick question... I have an appointment at 4 to get my first tattoo.. is my Dysautonomia going to be a problem. Will it cause the helping process to be prolonged or it be more likely that I will getting an infection?
Sorry I missed your question, but I honestly couldn't tell you. There aren't any skin problems I'm aware of with dysautonomia. The only possibility I know of is that some people (like me) have dysautonomia which seems to be related to a connective tissue disorder called Ehlers-Danlos. If you had Ehlers-Danlos, you would have overflexible joints, along with a lot of other things. We scar weird, and stuff like that. Let me know if you DO have overflexible joints, and I can point you to some good website reading. Even better would be to ask your doc if you think you might. He should know what to look for. Good luck!
I dont and havent had Ehlers-Danlos, but I would like to read up on everything I can so if you could shoot me those websites that would be awesome. And, yeah I will be asking my doctor about that tomorrow.
Thanks so much!
This one is good for in-depth info. Click on the "Reviews" button for each type. Start with the Hypermobility and Classic types. It's hard to get out of childhood without being diagnosed if you have one of the others.
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Ehlers-Danlosis frequently the cause of dysautonomia because connective tissue comprises the inside lining of your blood vessels. If this tissue is defective, it will cause your blood vessels to be more porous creating hypovolemia.
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