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Pure Autonomic Failure Or Ncs?


beth27
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I was diag with NCS in 2000 at age 20. I am now 27 and it seems over the years I've been getting progressively worse like extreme fatigue, daily chest pain/shortness of breath (not heart related), chronic bladder problems and constipation, etc. I was researching and saw that with NCS, it is more episodic with good periods in between, but pure autonomic failure sounded just like me, with all of these accompanying autonomic symptoms... does anyone know if this sounds like paf? Can you be 27 and have PAF or do you have to be middle age? Any help is appreciated.. thanks

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I think you can put Pure Autonimic Failure out of your mind. It's extremely rare. You would probably be paralized from the neck down. However, Partial Autonomic Failure is what many of us here are suffering from. Some small damage to the Autonomic Nervous System that results in dysregulation of affected internal organs....exact consequences different from case to case. This can include POTS, IBS, gastroparesis, liver dysfunction, breathing problems, cognitive problems, etc. etc. etc. NCS may also be included. Seems like you have some ANS damage, since you suffer multiple organ dysfunction (not just neurocardiogenic syncope). See a doctor who is experienced in POTS; whether a neurologist or cardiologist, POTS specialists deal a lot with dysautonomia (I use the term as it's usually used here in this forum, although the textbook definition of dysautonomia is a genetic disorder in a very special population of Jewish-European decent).

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forgot to add the age bit...age has nothing to do with pure autonomic failure. you could get it at any age from an accident (like car accident) that cuts the nerves. but there are distinctive emotional consequences. The person would not really care about his/her own illness....it's marked by total apathy, which is studied in psychology (my field) in relation to the biological factors in emotional and cognition.

well....hope this is helpful to you. but more helpful would be visiting a POTS specialist. you can check the directory through dinet.org.

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Hi,

I have NCS, but I certainly do have problems between episodes. I seem to be sensitive to exertion or lack of sleep.

note the following - from http://www.potsplace.com/

"What are the symptoms of NCS?

Neurocardiogenic fainting usually occurs while standing. Emotional stress, stressful condition and pain may trigger an episode, especially among the young (Shah, Gupta & Lokhandwala, 2003). The onset may be abrupt or associated with warning symptoms such as fatigue, weakness, nausea, sweating, pallor, visual disturbances, abdominal discomfort, headache, pins-and-needles, lightheadedness or vertigo (Deering, 2003). Presyncopal patients may also complain of palpitations, vomiting, disorientation, and difficulty speaking clearly or coherently (Grubb & McMann, 2001, p. 60.). Other symptoms that may present before a faint include feeling either warm or cold, tremors, yawning and having a bluish/purple or red coloring to the skin (Alboni, Brignole, Menozzi, Raviele, Del Rosso, Dinelli, Solano & Bottoni, 2001).

During the faint "seizure-like" activity may occur (Grubb, Gerard & Roush, 1991). This convulsive activity is thought to be distinct from a seizure disorder.

Patients are sometimes symptomatic after a faint as well. Patients may complain of symptoms including nausea, clamminess, lightheadedness, headache and malaise (Deering, 2003). Patients may also experience vomiting, abdominal discomfort, weakness, tremors, cold or warm feelings and confusion (Alboni et al., 2001). Patients who experience frequent neurocardiogenic syncope may report symptoms between faints as well, such as chronic fatigue, headache, chest pain, exercise intolerance, heart "flip flops" and an inability to tolerate prolonged standing."

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The Jewish-European side of it (aka Ashkenazi Jewish) tends more toward familial dysautonomia, whereas some docs lean toward northern European descent as related to non-familial dysautonomia.

I thought that PAF was generally diagnosed in the elderly population, and characterized by the body being unable to maintain BP on standing, though I don't really know the difference between that and NCS, except that NCS is more common in young people.

The autonomic problems caused by damage to the ANS would more likely be due to a virus or injury (esp. head injury). Many people have post-viral POTS, but many of us have POTS for other reasons. Dysautonomia is the general term for dysregulation of the autonomic nervous system, and while many people here have what is referred to (according to Grubb's papers as I recall) as partial dysautonomia, it's not termed failure except in PAF. Multiple System Atrophy is very rare and involves many organ systems. There are explanations of these on the main website and at ndrf. org.

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Beth,

I was dx with POTS by a cardiologist and my PCP says I have both pots and NMS. I've continued to get worse even with treatment. My pots symptoms are under control some of the time, but like you I have constant fatigue, flu like symptoms and chest pain/pressure daily. I was referred to an immunologist to look for other health issues. She is testing me for rheumatoid arthritis, Lupus, Lyme and Fibromyalgia. She believes I have Fibromyalgia. I will find out in 2 weeks. You might want to check for other health issues to see if you have another underlying illness that could be causing your symptoms as well. Good luck and hope you find relief.

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