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arh0006
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I went in for a follow up with my autonomic doc the other day and left with a possible diagnosis of Pure Autonomic Failure.

I was shocked when he mentioned it. I explained that I had new symptoms regarding my bladder. Namely incontinence, having to strain to pass any urine and just plain not being able to go to the bathroom even though I could feel that I had a full bladder. I also informed him that I wake at least 4 to 5 times a night to go to the bathroom.

In short the doc said he felt I have a neurogenic bladder. As such given the host of other symptoms I have he felt I was now a candidate for PAF. I am only 28. I am not ready for this. He said he will put me on

Zoloft soon and at this point I am welcoming the idea of an anti-depressant.

Researching on the internet I found the medical prognosis associated with PAF and it is not very pretty. The most alarming aspect is that it can acutally reduce your lifespan. One article stated many only live 20 years following a PAF diagnosis.

I have written all of this to ask other members about their knowledge of PAF. I want to gain a real understanding of what I should be expecting with PAF and whether it can indeed shorten one's lifespan. I guess I just want to know the truth about what I am facing.

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You may want to look on www.ndrf.org and read the patient handbook.

PAF is not believed to be lethal although it is chronic and can be disabling (just like all other forms of dysautonomia).

Have you, or can you, seek one of the autonomic specialists to be evaluated by (Mayo, Vanderbilt, Dr. Grubb etc) so that maybe you can get more definitive answers?

You will find that MANY of the symptoms cross over between the various "diagnosis" (POTS, NCS, MSA, PAF) and you really can't go by symptoms to diagnose. It's best to have all the testing (tilt table, sweat test, qsart, catecholamine testing etc) done to determine exactly what portions of the nervous system are/aren't working which helps to narrow down the correct diagnosis.

Many people confuse PAF with MSA but they are not the same thing.

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Hello Poohbear,

I was diagnosed with NCS at the Mayo clinic in Scottsdale after extensive autonomic testing. At that time they were trying to decide whether I had NCS or PAF.

The doctor who diagnosed me at Mayo referred me to a local cardiologist who I have been seeing. As such this cardiologist now says he feels, according to recent test results, that I have PAF.

It just seems like the medical literature on PAF is very contradictory, with some sources claiming PAF can affect life expectancy and others claiming it cannnot.

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I understand your dilema and I'm in a similar situation it seems.

I was diagnosed over 10 years ago with NCS; then about 4 years ago I was told it was POTS. I went to Mayo in FL who said it was NCS and "something else" and they sent me up to Mayo in Rochester. Then I was told I actually have both NCS and POTS.

Little by little my situation has progressed. I've also been seen by Vanderbilt.

Now I'm being told that I have progressed into PAF and yes, you are right the data is conflicting but my experience has been that Mayo, Vandy (the 'experts' so-to-speak) agree with what data they do have to date that PAF is not fatal. I don't know that I necessarily agree with them because I see in my own life the damage that has been done to various organs which HAS to have a lasting effect. I do believe though that MSA is still the most scary/life limiting of the dysautonomia's that they know about.

I am reminded by the researchers that those of us who have been through the research studies are their data. Since this field is relatively new and they've only been doing research for about 15 years now they are essentially learning on us.

If it's been a few years since you've had the testing at Mayo you may want to see if they think repeating the testing would help identify your current status more clearly.

At this point, it really doesn't change your treatment options and you still have the battle of symptom management so hang in there and do your best to find the balance between your need to know the specifics of what you are dealing with and living your best life. I hope that makes sense. I'm tired and brain fogged!

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tannehill -

i have autonomic failure myself and am also in my 20s. i have seen many of the top autonomic docs in the country and have read a lot of the literature/research.

a few things though.....

a neurogenic bladder diagnosis does not necessarily mean autonomic failure. like pooh said, there are a lot of overlapping symptoms between different diagnoses. there are many who have a neurogenic bladder who do not have autonomic failure and also many with autonomic failure who do not have a neurogenic bladder. personally i am unable to empty my bladder and have lost a lot of sensation re: the need to go, etc; i need to self-catheterize several times daily.

i guess i'm wondering what testing makes your current doc feel that autonomic failure is now the diagnosis? i'm not trying to sound doubting, but it is a very unusual diagnosis for someone in his/her 20s. i'm saying this from personal experience and much discussion/collaboration/testing that i've had around the country.

re: life expectency in autonomic failure, you're right that the info is a bit vague. essentially the reason for this is that most if not all of the research is in regard to people at least in their 40s, more often in their 50s or older. thus....the article that you're referring to (the one that mentions 20 yrs) is speaking of 20 yrs past someone in his/her 50s or so. and living into one's 70s is considered an entirely "normal" lifespan. thus the conundrum....what does it mean if someone develops autonomic failure at a significantly younger age? the verdict is - quite honestly - still out. b/c the research just hasn't been done.

i realize that i'm not giving you any concrete answers....perhaps in fact more questions...but hopefully the information about all of the unknowns is helpful in some way. i also have a probable diagnosis of a mitochondrial disease which may or may not be the cause of my autonomic failure. most of my docs also feel that i there is an autoimmune component to my progressive neuropathy over the years.

ultimately treatment between many of the autonomic dysfunctions. and even the best docs will readily admit that there are more unknowns than knowns at this point in time.

hang in there,

:blink: melissa

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My husband has NCS and neurogenic bladder (and also bowel). Detro LA has been a wonder drug for him for this condition but he did see a urologist for the treatment. The urologist was an associate of the EP cardiologist that gave a 2nd confirmation (actually 3rd confirmation) of his NCS diagnosis. Sorry I am not as familiar with PAF - I learn about the different symptoms of this disorder as they pop up and that keeps me reading enough.

Here's a link to a recent article abstract on autonomic failure and the bladder. Sorry but I do not have access to the full article.

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_DocSum

Clin Auton Res. 2006 Aug;16(4):296-8. Epub 2006 Jun 21. Links

Pyridostigmine in autonomic failure: can we treat postural hypotension and bladder dysfunction with one drug?

? Yamamoto T,

? Sakakibara R,

? Yamanaka Y,

? Uchiyama T,

? Asahina M,

? Liu Z,

? Ito T,

? Koyama Y,

? Awa Y,

? Yamamoto K,

? Kinou M,

? Hattori T.

Dept. of Neurology, Chiba University, 1-8-1 Inohana Chuo-ku, Chiba, 260-8670, Japan, tatsuya-yamamoto@mbc.nifty.com.

In a 66-year-old man with autonomic failure, pyridostigmine (180 mg/day orally) improved both postural hypotension and underactive detrusor bladder dysfunction. Acetylcholinesterase inhibition may be useful in the management of orthostatic hypotension and bladder dysfunction in autonomic failure patients.

PMID: 16862395 [PubMed - in process]

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I was diagnosed with PAF at Vanderbilt in Jan. of this year. Before going there, My cardiologst dx me with POTS He was also concerned that I might have MSA, although he never said that specifically but hinted at that as a possible dx. I was worried about that and therefore was relieved when Vanderbilt told me that I did not have MSA or POTS but PAF which resulted in profound hypotension. That is my only major symptom and I believe that I am doing better than those who have POTS becaue it seems that POTS causes multiple symptoms. Consquently, a diagnosis of PAF is not the worse possible dx. There is a man who posts under the name of Bill who was dx 20 or longer years ago with PAF and is now 66 years old and is doing well without medication. That proves that PAF does not necessarily shorten life expecentacy. I think all of us when first knowing that we have some automonic dysfunction researches it on the internet and runs across MSA. One week-end last November I was convinced that I had MSA with only a year or two to live. I know now that is not the case. It may be that MSA is rare and it is more likely than not that you do not have it. Try to get into some place like Vanderbilt where you can get a definitive dx. I also had a urine test that involved the problems that you described, the feeling of a full bladder and unable to void. I am ok in that regard but if I had not been, I think Vanderbilt would have had a treatment for that dysfunction. Good Luck.

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Thanks for all of the information everyone. I do not talk about my situation much to family or friends and sometimes I feel like I'm going to explode if I do not vent my fears or relate my symptoms to someone that understands.

I do feel more relaxed since I have posted my concerns. It feels good to tell the whole truth regarding my symptoms and situations to someone, as I usually reply to a "how are you feeling" question, with a benign, non-commital "pretty good" and then proceed to change the subject.

This illness showed me who my true friends were. Those that stood by my side and those that became less engaged and drifted away. I suppose I am thankful that the illness revealed shallow friendships. But at the same time I question if I would turn away or cease to deal with an unhealthy friend. I am not trying to justify such actions but I do think human nature causes people to disassociate with those weaker themselves. Fear of the unknown is a very strong emotion and an unhealthy state is not often something people want to come to understand.

The hardest part about having a dysautonomia is not the symptoms. It is in every moment my Mom has to pick up my child because I am too dizzy or weak to hold him. Each time my husband must do the dishes because I am too weak to stand. I am beyond indebted to everyone I know. And yes I am appreciative of the fact that they assist me. Yet at the same time I carry around a deep sense of guilt because I know nothing I could ever do would be able to repay their kindness.

I am sorry this post is not upbeat, but it is honest and from the gut. These are feelings I think many experience but do not share. But in a weird way it is a relief to express them.

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Oh TanneHill!

We have all been in that situation...I felt so guilty for the longest time about my children and how they were 'given the short end of the stick' with having me for a mother. But now I see young adults filled with compassion and going into fields that will help others... None are aggressivley,upward mobile, heading into 6 figure careers. Instead they are finishing degrees in working with the learning disabled and law. They care about others and the enviornment. Many people had to help pick my children up for me and I left a lot of dishes and laundry undone. The guilt that I use to feel so overwhelming is gone and has been replaced with pride and a sense of contentment.

Hang in there....it is a really rough ride but, for myself, is turning out to be pretty darn good.

Maggs

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I just wanted to say hang in there. I also want to say that some of the doctor that talk about DX and don't do the testing take as face value. I been DX with more things, some I have not had. Please contiune seeking information and whats going on. Trust your body. I know I am one to talk, but don't focus on the DX focus on what makes you feel better, and what makes you feel better. I was told a few weeks ago to look at everything in a new lite. Don't fouse on the POTS and NCS fouse on what you are feeling know and have the doctor look at that. There truth to that I foces so much on POTS, and not even letting doctor get the hole picture. ( I know for me this was the best thing I could have done as I have been able to move on and focus on the hear and now, and work at treating the systoms I have now!

I wish you the best. Let us know how things go! B)

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