Differential Diagnosis?

[RunningWild]

I've read a few things on various websites, but do a lot of people experience the diagnosis being wrong?

Like, were any of you diagnosed with POTS to be told that it was actually something different? And if so, what was the other diagnosis?

Or maybe it was the other way around?

I know the diagnostic criteria for POTS are pretty solid with the heart rate increase, but could that be caused by a myriad of things?

[MomtoGiuliana]

POTS itself is not a disease but rather a syndrome. There are various known causes, some poorly understood, and probably other causes not understood at all.

Perhaps this link might be helpful as a start:

http://www.dinet.org/what_causes_pots.htm

[sue1234]

I have the "diagnosis" of POTS, but to me, it is just a descriptive term for something they haven't yet figured out the cause for. So, I guess you could say that I think I have something that gives the symptoms called POTS. I am still looking for the root problem.

[RunningWild]

Ah I get it. So while you can be diagnosed with POTS, its really more of a catch-all :/

That's frustrating.

[HopeSprings]

I keep wondering about this too. Is it possible we all have a common link (virus, antibody etc.) or are the causes varied, with "POTS" occuring in multiple illnesses.

[sue1234]

Yes, Naomi, and that's why I don't quit looking for a doctor that will help figure it out. I've already had almost 6 active years taken from me, and don't plan on sitting it out(literally) the rest of my life.

[HopeSprings]

Yup, I've lost half of my 20's and almost all of my 30's. Not looking to do a life sentence here.

[Katybug]

I totally agree that we seem to have a common link and we need to keep searching. I just started with an Immunologist (who, by the way, is GREAT! Really willing to think out of the box.) When I was leaving, I asked him a question about the mystery bumps I get on my fingers when I get a viral infection, and he said, "Let me tell you something...there's more we DON'T know about the immune system than what we do know. We should be looking at your case as "Katie's Disease" because it's probably some sort of autoimmune issue we don't have a name for yet. It doesn't mean you don't have it and it really doesn't matter what we call it. We need to see if we can figure out what triggers it and how to make you feel better." I couldn't belive it!! He get's it!! I told him I don't care what we call it either if we can get a good tx plan. (I did suggest "My Most Pain in the Butt Patient DIsease. ) You know, the more my mom and I go over my medical history from birth, the more I'm convinced there has been a low lying problem there my whole life and my bet is that my tick-borne illness 4 years ago just really set it off and brought it out in all its ugly glory.

[kluesyk]

I agree.... I have a genetic history of tendancies toward autoimmune in my family (Mother and grandfather temporal arteritis or giant cell arteritis-autoimmune attack on the blood vessels, and on my dad's side, aortic disection, asthma & chronic angioedema, chronic muscle pain and hyperflexible joints).

I think it just takes a certain trigger (virus, bacteria, environmental or injury) to set off our immune systems.

20 yrs ago it was a massive exposure to organophosphate pesticides that set off mixed connective tissue disease in me for over three years, then it went into remission. My body just reacts badly. I had 15 years of good health, even tho I had chronic angiodemas during that time.

I decided to get horses in my middle age and worked in the barns cleaning stalls, ect. I developed chest pain and shortness of breath (might have been when I got the mycoplasm pneumonia). A few months I later dropped a bale of hay while feeding the horses and one ran into the barn and as I was bent over, hit me on top the head, knocking me out. Had a bad headache and neck pain for 10 days but thought I was ok.

Never was the same....orthostatic problems began, passed out after going up one flight of stairs, potassium tanked, lost my ability to physically work, would shake and heart rate would go crazy, sold my horses, dr's said I was menopausal.....right.(that was a male dr that lived with a menopausal wife).

One year later they find out finally my thyroid is not working. Another year later my adrenals aren't working..(I don't have any TSH or ACTH which is produced in the pituitary, but at the same time I have autoimmune antibodies to the thyroid, too) and this past year I was diagnosed with hyperadrenergic POTS and most recently my immune system tanked, low CD4 & CD8's which may be autoimmune.

So in my case I believe the mycoplasm p bacteria that I can't seem to clear irritates my immune system, so that I have autoimmune problems, and the hit on the head messed up my pituitary so it didn't produce the necessary signals for my thyroid and adrenals to work. The POTS may be related to both.

Just my opinion, but it makes sense to me.

[RunningWild]

I think I'm just -weirded out- by my POTS dx, because I don't know what could have possibly triggered it.

And I'd hate to keep worrying and researching and freaking out and go to another Dr, just for them to tell me its wrong, or its something else.

Or it's nothing.

sigh.

[julieph85]

My problem is even wierder and frustrating, I have literally all the symptoms of POTS syndrome except my heart rate does not STAY up when i'm standing, it goes up and down so no doctor will diagnose me with pots. However, they will also not diagnose me with anything else either, they say they haven't seen anything like it before, but something is wrong. Hopefully the Mayo will have an answer for me in january, but i'm not counting on it.

[RunningWild]

Julie- that is very strange, and I'm sorry nobody has been able to give you any answers yet.

I hear Mayo is wonderful, though, so maybe that will be your saving grace!

[Maiysa]

I have the same as Julie where my blood pressure goes up and down when I stand up. It's not all the time, but when I am tired, or have a cold or flu or menstrual cycle...etc. Anyhow, I have had this since I was about nine along with the fainting and was diagnosed with petite epilepsy. Then of course 5 years ago got the terrible lung infection, my life was never the same. So it's obviously always been there, the dysautonomia. And now I have idiopathic autonomic neuropathy, but I just found out from Mayo that it's only half of the situation. I thought we were done diagnosing. I guess I misunderstood. So we found a great immunologist in Vegas. So he is trying to fit the pieces to the puzzle. But I woke up with a new symptom and my finger was sprained for no reason and now I have some bruises around my knees and ankles and my hips, although they are 47 years young, hurt like I'm 100. But it's still a good day. I'm not sick to my stomach or having a migraine. Funny what good days are now. Peace and health to all. Oh, and they took the petite epilepsy diagnosis away. I didn't need it anyhow.