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TOPIC TITLE: Baroreflex/Autonomic Disorder/Failure
Created On 1/6/06 1:46 AM
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BubbeSarai
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1/6/06 1:46 AM
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Anybody know about other forms of Dysautonomia? My mother died as a result at age 56. Our youngest is developing symptoms at age 16. Our middle child began developing symptoms at about age 18. Our Eldest developed symptoms at 1 1/2 and our infant grandson is developing symptoms at age 6 months. Is there a physician recommended near Haifa to investigate our son and grandson?

My symptoms have been lifelong but are now at the point where they can no longer be controlled by medications. Our small regional hospital has told me nothing can be done. Our larger University hospital (6 1/2 hours away has done many investigations and can document symptoms but has suggested that unless I am willing (financially able?) to travel to the United States (Mayo) that medication is the best they have to offer.

I have been told by a geneticist that there is no genetic link to what we have. How can this be? My maternal line is Jewish, my paternal line is contiguous until my father and his siblings.

Binny's Bubbe


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Moulded from dust... Be ever mindful of the insignificance of where you came from.
 
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happyone
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1/6/06 8:05 AM
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Dysautonomia can come along with many mitochondrial diseases. Were you ever evaluated for mitochondrial disease?
 
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BubbeSarai
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1/6/06 4:05 PM
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Mito-what-drial? I guess that answers your question. Local doctors have NO idea what they are dealing with. I was airlifted to the University Hospital in the city and they had NO idea either. I provide a lot of entertainment and curiosity but that really does not help me very much. My son in Israel suggested exploration of a genetic basis. This didn't go very far in an area with a very small Jewish population. (I was unable to even get Kosher diabetic meals). I know this is not Familial Dysautonomia but that seemed to be the only genetic autonomic disorder the genetics department was aware of. I have been told this is definitely some form of Dysautonomia simply because it is the autonomic system that is funky. The physicians are using Baroreflex Failure as a working diagnosis just because they don't quite know what else to call it and this seems to come closest. I tried to Google Mitochondrial but it was far too technical for me. Perhaps you might provide a link to a more layman-friendly site.

Thank you.


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happyone
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1/7/06 6:13 PM
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go to www.umdf.org
united mitochondrial disease foundation
its good for a start.
 
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BubbeSarai
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1/8/06 1:22 AM
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Thank you.... I have passed this information on to our son. His physician has been supportive of this being a possible explanation and will do any necessary testing there. If something is found, we will then give direction to physicians in Canada to hopefull assist the rest of the family. Have just come out of a nasty period of hypertensive surges. Family indicates my speech is no quite back to normal but I am able to communicate quite well in writing between events. Headache remains and I don't expect this to recede until the blood pressure has dropped back below 180/110.

Sarai


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Moulded from dust... Be ever mindful of the insignificance of where you came from.

Edited: 1/10/06 at 11:44 PM by BubbeSarai
 
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