Today I read a letter from my current neurologist, written to my cardiologist. There were opinions expressed in the letter that were not told to me directly, and I'm depressed and very, very worried about what I read. The neurologist seems to feel that based on my most recent symptoms, it is likely I could have PAF. He's basing this mainly on my recent difficulty with swallowing food, which I personally feel is mostly an anxiety issue with me though I cannot be sure. He also allowed for the possibility that the issue is anxiety-related, yet there he was in this letter to my cadio doc saying PAF was likely, too. I am scared to death and heartbroken.

I am only 34 and was first diagnosed with POTS and Neurally Mediated Hypotension at 29. I have never had any bladder problems whatsoever, and my bowel issues are rare and only caused by my intestinal diseases (Celiac and Colitis.) I have developed a fine tremor in my right hand, which has improved since switching beta blockers. My tachycardia is under control, though other symptoms such as muscular strength and ability to go out and exert myself has gotten more limited over the past 8 months or so. In other words, I've had improvement in some areas and a slight worsening in others.

Could any of you tell me what you think of what the neurologist said? It was only one line on the page, and yet it has upset me beyond belief. PAF has never been said to me directly, and I thought my age, gender, and lack of bladder involvement made it very UNlikely. Now I'm scared because of what the dr theorized in his report. Guess I'm just looking for some first person accounts of this and some support. Thank you so much in advance.

Gillian

I don't know much about PAF, but I'm scared of it too. From what I know about it, it doesn't sound very likely to me that you have it. I'd make an appointment with your neurologist and ask him about it, and also consider getting a second opinion.

Vanderbilt has good info on it, and I hope it will reassure you.

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4790

I was diagnosed with PAF. I have severe Orthostatic Hypotension. That seems to be the worst of my symptoms. I've gotten to the point I just had to retire and I was approved for Disability. I've never experienced any problem with swollowing and I don't have any bladder problems. I do have tremors in my hands sometimes when I'm ready to pass out. I have problems with constipation. I was under the impression that PAF was almost the same as POTS except with no tachycardia. Also lately I've had shortness of breath and am exhausted very easily.

Hi KarenSch,

How do you manage your constipation? I've an ongoing (3 year) problem with this and it really is one of the symptoms that stuff with my life. I have POTS. I appreciate any info about this subject that you could pass on.

Many thanks,

g33,

I have trouble swallowing at times too, it seems to come in bouts. Not swallowing food usually, but just swallowing. We swallow unconsciously a lot of the time I think (saliva), but sometimes I become aware of the fact that I can't swallow, and it really bothers me. I find that if I get something to drink I can start swallowing again.

On occasions I have swallowed some food but it's just come straight back up again. I don't think it's even made it to my stomach. It sure doesnt' feel like it.

Just wondering if any of those symptoms are the same.

Altough I haven't got PAF, I'm not sure that PAF is as scarey as it sounds. It's not MSA or Shy-Drager. But I'm no expert in this, that's for sure. I'm a medical/science ignoramus.

Hi bluskies - I haven't really found anything for constipation that works for me. Once in a while if I really need it I will take some milk of magnesia.

Another symptom I forgot to list is the horrible neck pain I get, and all I can do is lay down until it goes away. I get this daily and usually just take a pain reliever for it.

For those with severe constipation or bladder problems, there is a neurostimulator called interstim that can help. I have one and am satisfied with the results.

Thanks for all the replies thus far. I just found out about this yesterday so of course it's all I've been thinking about. I'm 34 and wanted kids in 3 or 4 years so thinking about getting worse rather than possibily better is not something I wanted to consider. I'm also scared of bladder issues which I thought was one of the hallmark symptoms but perhaps that's incorrect. Basically, I just don't wanna be worse than I already thought I was. I thought PAF was primarily a mid-to-late life issue, and also mostly a male problem. I'm baffeld as to why my neuro would label this on me, and I'll definitely be following up with him on this.

Some questions to those who have PAF (and let me say, I'm sorry for making PAF sound so dire on here! I'm just scared right now)--aren't catecholomine levels in the urine one of the main ways to diagnose this? If those levels are normal, wouldn't that basically rule out PAF? How did those of you who have PAF get the diagnosis as opposed to just being told you have POTS, for example? How is that distinction made?

Gillian

I was diagnosed while I was at UCLA Medical Center. There were so many tests I'm not exactly sure what they based it on. I think it was the process of elimination and the symptoms I had. I don't have heart problems. My heart rate hardly changes (I think in the 70's). My blood pressure is usually O.K. while I'm laying down (simetimes too low). It drops when I sit and then drops alot more when I stand, so much that I will pass out within about 30 seconds to about 3 minutes if I don't sit back down. By then my BP is so low it doesn't register on the monitor.

I had a blood test that showed my catecholomine levels were extremely low. That test took about six weeks to come back, but for some reason they were already convinced I had PAF before they saw the test.

By the way - I'm a 54 year old female. My symptoms started about four years ago with light-headedness and they progressed until I passed out about 5 months ago and ended up in the emergency room with facial injuries. That's when the doctors started taking me seriously and I was diagnosed.

I think my problems started when I started menopause. Not sure if it has anything to do with it, but I wonder.

Thank you, KarenSch. That helps a little, because now I will ask my doc to re-test my catecholomine levels. This dr that feels I may have PAF has never tested my catecholomines, nor has he done my Autonomic testing, so he's apprently basing this on my previous diagnosis of Dysautonomia as well as my trouble swallowing food. At this point I want to arm myself with as much info as I can.

Another Q--can a person progress with their Dysautonomia from POTS to PAF, or would it have had to be PAF all along and the original dx was wrong? Can one type of Dys progress into another?

Gillian

Hi karensch,

My problems definately got worse when I entered perimenopause and have continued to escalate (I can see this in retrospect). I'm post menopausal now, but only just so, so I'm hoping my symptoms will subside when my body adjuts to being past menopause.