Is Pots Your Primary Diagnosis?

[Rafiki]

After reading many of the posts, it appears that for many of you your dysautonomia is secondary to another condition, but for others it is the primary diagnosis. I'm just wondering about that. For those of you that it is the primary diagnosis do you think that is accurate? Do you think something may have been missed? Just curious about numbers of people for whom it is a primary diagnosis. Does anyone have any idea?

Debbie

[maggie]

My primary dx is pots and as I read the forum I notice that I don't have as many problems as others who have other health issues. I just have to deal with pots, high heart rate, exercise intolerence, tired all the time, and can't sleep well, just the usual symptons that pots gives one.

Maggie

[MightyMouse]

For many of those with POTS as a secondary diagnosis, as Maggie notes above, there are usually extra symptoms that come along for the ride, which would be your hint that it might be more than "just POTS" (as if that's not enough ). For me the other telltale signs were joint, back and neck problems, dislocations (jaw, fingers, toes, knees) major GI issues including exceptionally slow transit or no transit of food, easy bruising, etc...

all that being said, knowing that I have a collagen defect hasn't really changed how my treatment progressed--none of my medications or other interventions have changed as a result. I suppose that might be different if my "primary" dx were something more "treatable"--but for now, it's just an interesting factoid about me that helps me understand why my body does the things it does.

Nina

[potsgirl]

My primary diagnosis is POTS/OI. They think it was caused by a virus I came down with a couple months after moving to the desert Southwest. I had heart problems first, and am still not sure how the two are related, or if they are at all. I'd love to know!

[Poohbear]

My understanding is that POTS is not a true diagnosis. POTS is a term used to describe a Syndrome. If someone tells you that you have idiopathic POTS then that really means that the root cause remains unknown. Any Dr who gives you a "diagnosis" of POTS is simply basing that on your symptoms since they don't know what the root cause is.

Even the people who were probably born with this are suspected to have an autoimmune component but to this day there is not yet confirmation of that--there are researchers currently working to find the antibody(ies) potentially responsible in those cases.

[janiedelite]

My understanding is that POTS is not a true diagnosis. POTS is a term used to describe a Syndrome.

Yes, that's what Mayo told us too. They tried to do all the tests to rule out all the underlying conditions they could, but in the end he said POTS is a syndrome that describes a constellation of symptoms commonly experienced by those who have...POTS. He also concluded in my case that I had small fiber neuropathy probably induced by an autoimmune attack after having mono in 2006, so I guess SFN would be my underlying condition.

[sue1234]

Thankful-

With your elevated catecholamines, have you been thoroughly checked for a pheo?

[MightyMouse]

I have HUGE catecholamine numbers, but I do not have pheo--was checked thoroughly at NIH by a pheo guru. Just my body working overtime to keep me upright and conscious most of the time that I ask it to do so.

Nina

[kschoon777@yahoo.com]

I was diagnosed with PAF (which is in the same category as POTS, I think, but without the high heart rate) and also with small fiber neuropathy. I didn't pay too much attention to the neuropathy because it wasn't bothering me too much. I just started seeing a neurologist that told be my PAF is caused by the neuropathy. Now he's trying to find the cause of my neuropathy. I'm having blood test done to check my thyroid, B12 levels and other stuff. I'm also scheduled for another nerve conduction study. Hopefully he can find the cause and treat it. Wouldn't that be great!

[sandymbme]

Pots is my primary Dx, for the moment. My PCP is convinced that I have an underlying condition that if we identify it, we can treat it. I too, have massive GI issues, although a gastric emptying study did not shed any light on my issues. My TTT is the only test I have had that has ever given a conclusive answer, so for the moment I am just potsy, but we shall see...

[erikainorlando]

POTS is my primary diagnosis. I would love to believe it to be something else that could be corrected...but after I read and read..I am probably really only POTSY. Although that is enough...as most days I feel terrible.

[Brye]

I have POTS as a primary diagnosis. I have chronic venous insufficiency which probably contributes to my problem. I haven't really been tested for anything else. I have other symptoms I blame on POTS like nausea and vomiting, trouble swallowing, memory problems, bladder problems. I figure autonomic dysfunction is causing the POTS and is probably contributing to my other symptoms. I'm just hoping to regain control of all of these symptoms eventually. If they get worse I guess I will seek out the million dollar work up for more answers. Until then I just try to keep myself upright!

Brye

[janiedelite]

Oh yes. Negative thank goodness. My norepi level was only mildly elevated according to Mayo (250 supine, 1089 standing).

[Lizzegrl]

Primary POTS here too... mine is said to be traceable to a gene defect, and my symptoms are largely cardiac related. I consider myself a lucky one in that they are trying to treat the worst of the symptoms and some of it is working!