Finally! A doc agrees with me

[Freaked]

Unlike many here, I've actually been hoping for a medical diagnosis, because it's been painfully obvious I'm sick. I can no longer stand for more than two minutes or climb stairs and I've collapsed a few times. But apparently if your tests are mostly normal, docs aren't that concerned if your heart races every time you're upright or if you fall and the nurses have to catch you.

I've been pretty sure I was either dying or had a thing called postural orthostatic tachycardia syndrome. Most of the common potentially deadly conditions have been tested for, so it's hopefully pots. Problem is that most docs have never heard of it, and my cardiologist started fobbing me off once my tests were normal. I was ending up in a and e so much during bad episodes that a psychiatrist said I had a somataform disorder, which basically means that your mind creates crazy symps, which was just ridiculous as my probs started with a bad flu. Other docs said other things: post-viral fatigue, chronic fatigue syndrome. I was getting help for the extreme anxiety my symps had given me, but physically I was as bad as ever, waiting for a far off appointment with a specialist and in the meantime having all sorts of tests ordered by different people.

But today, my cardiologist called me with the results of some tests (normal thank god) and casually mentions that he thinks it's pots and is going to send out compression stockings. I could have sworn he'd never heard of it and just thought I was crazy.

FINALLY AFTER FOUR MONTHS SOME HELP :ohmy:

[loopyloo68]

Hey, POTS is something I'm living with...I have been diagnosed with EhLers Danlos Syndrome( EDS) a faulty gene causing a mutation of collagen. Yeah, I'm a mutant :). My heart rate rises dramatically when standing and I come over all funny like I'm going to faint. My doc says POTS is part of EDS due to the autosomal dysfunction. She calls me a sensitive soul....well, in short it causes problems with breathing, swallowing and all things that should be automatic....I'm 45 and have always had this, I have just learned to live with it. The problem is, I panic...and i guess you do too..

[joelhall]

I think this may explain your sweating you mentioned in another thread. In fact, if you are suffering from dysautonomia it may explain a great number of your symptoms. Have you been asked to do some follow up tests?

[Freaked]

Yeah, joehall, it probably does explain a fair bit, though the thing is with pots that it's a syndrome rather than a disease, so different people have different causes and symptoms and it's very hard to establish what's 'normal', and I haven't been able to talk to a doc who specialises in it yet. Unfortunately I don't have any pots-related tests until my diagnostic appointment at the end of July, as my cardiologist doesn't consider it his area. My gp is supposed to be organising me an event monitor though.

Loopyloo68, yeah I've come across a lot of people with EDS on the dysautonomia boards. Don't think I have it myself, but I do get the awful heart rate and faintness problems. I'm actually considering getting myself a wheelchair till I can fix this; trying to walk is just so stressful and seems to make me worse. Don't know where the genetic aspect comes into it for me, but I have a lot of weird nervous system issues all my life (severe hyperhidrosis for one, and chronic reflux and ibs are both pretty rare in children). I was also told a few times that my skin is abnormally thick, both external and in my ear cannals and places. No idea what that means; not sure if that really fits with EDS. What signs did you have?

As for anxiety and panic, it seems to me that most people with pots develop them at least for a while. Partly because the symps are so alarming and can be unpredictable, and partly because at least in lot of people it causes adrenaline surges or general stress hormone weirdness. Sometimes, if I'm not doing anything physical, I can't tell what's pots weirdness and what's panic.

[joelhall]

Yes it's not really a cardiological area, best is to get a neurology referral.

[loopyloo68]

@ freaked, EDS hypermobility type is what I have.... The collagen is too stretchy inside the body and on the surface. I was diagnosed by a rheumatologist
My symptoms are
1) Scored 9/10 on the Brighton score .....very bendy joints, my knees Bend the opposite way they should. My ankle are loose and I can dislocate joints easily.
2) defective gene
3) dysautonia that manifest as feeling faint when I stand quickly, GERD, anxiety, abnormal inappropriate adrenalin rushes, restless legs, twitching muscles, breathing problems, IBS.
4) chronic fatigue
5) muscle pain

Was originally diagnosed with depression and anxiety in 2 minutes by a lazy GP. The only reason I got referred was down to a locum GP who recognised the symptoms. Then it all fell into place.

The anxiety is the most difficult thing to deal with because it comes in waves, even when I'm not stressed.

Worry constantly about my health now as well......anxiety makes everything much worse.:weep: