Just Saw My Pots Doc For First Time In A Few Years.

[blueskies]

Last week I saw my pots doc -- a vascular consultant -- for the first time in a few years. I've been seeing my other specialists much more regularly -- my gastroentorolgist, allergist/immunologist, pain specialist, even my neurologist a couple of times (and he never helps me), and another specialist that I can't think of at the moment. (Brain fog is so bad today I couldn't follow plot line of Bold and Beautiful so I know it's baaaad!) . My apologies if I ramble a bit while trying to get to my point(s).

Anyway, I knew I had to make the effort to get back to see him. I first saw him about 8 nearly 9 years ago when he diagnosed POTS and Erythromelalgia. I was seeing him quite a bit in the first 5+ years following diagnosis but my different symptoms that involved the most pain and distress were the ones I was focusing on:. Chronic constipation, allergies and intolerances and chronic daily migraine and I was using up my spoons visiting the specialists that treat those problems. It was only the increase in erythromelalgia flares and pain that finally motivated me to get back to see my pots doc.

I had a long consultation with him. Very hands on. Which is something that most of my other specialists (and my gp) don't do much of. My pots doc does the full physical before ordering further tests. He's a true old fashioned genius diagnostician -- and other doctors have commented on his abilities. I'm lucky to have found him. I suspect I probably still wouldn't be diagnosed and have gone mad by now. So, last week, hoping for some answers (some newish treatment?) for my problems, I did get probable answers but not of the kind I was looking for.

He found that I have an enlarged thyroid and he's also said, after listening to my chest for some time, that it sounds to him like I have MVP. I wasn't shocked at the MVP as I've been dragging myself around the house mostly, over the past three years, feeling like a rung out dishrag but getting episodes of tachy when resting, waking with them during sleep etc. Just rolling over in bed will bring it on.

I had the ultrasound for thyroid yesterday but don't yet know the results -- but as well as explaining a number of symptoms it could explain my increasing depression too. Depression ain't all in the mind and a thyroid that doesn't function properly is a cause of it. My echocardiogram is on Friday. My pots doc seemed pretty sure it was MVP and that test should confirm it. I wasn't really surprised when he said MVP because I know -- thanks to the members on this forum who have it -- of the high number of POTS patients that have it. It might be dilated hypertropic cardiomyopathy -- hopefully of the mild type - which runs in the female line of my family. It might not be, I hope not. But Friday should tell.

It's all a bit up in the air so far. But I could be getting more answers to why I feel so hellish and hopefully some effective treatment.

It's also a warning to me to make it a priority to see my pots specialist more often so we can concentrate on the 'bigger picture' -- that something else may be going on -- rather than only seeing individual specialists for my distinct, more painful problems.

Sorry I've rambled but I'm at a point where I really can't think straight. I've been trying too. But getting to the point has become a circuitous route now. Not only with dealing with pots -- those **** moving 'goalposts' -- but explanations of why I feel so crap have become more and more detailed. I can't stick to a point to save my life. And I've tried to discipline myself to do so. No luck.

blue

[little_blue_jay]

"dilated hypertropic cardiomyopathy" , sounds scary, hopefully it isn't that!

Sounds like you've got a great doctor! "Genius diagnostician", sounds like House!

TMI coming: If you don't mind my asking, what did anyone tell you for the chronic constipation? I have that too. All my doc told me to do is 'take Lax-a-day till your poops are the thickness of your thumb'! Great, till I get dependent on it

[blueskies]

Hi little blue Jay,

I have problems with laxatives. For example, senna and coloxyl cause my erythromelalgia to flare. (I just took it for a week, in large doses, as i was desperate and had 2 decent bms eventually but skin was burning and hot and it will take a while for that effect to clear my system although as soon as I stopped it laxative pretty much stopped. It's a worry.). Movicol causes skin flares and almost instant migraine. I think the equivalent in the USA is Mirilax, but I'm not sure. I had an anaphylaxis reaction to another type of laxative. I was doing okay for a while just using glycerine suppositories but they have run out of power or my constipation is getting worse again. I wish I could help you more but my gastro doc says do what you have to. Not exactly helpful as I've pretty run out of options. I'm thinking about asking for mestonin - a pots med -but side effects can be pretty daunting - from my reading. The good side effect is loose bowels and it worked for one other constipated pots person, that I know of.

Blue

TMI coming: If you don't mind my asking, what did anyone tell you for the chronic constipation? I have that too. All my doc told me to do is 'take Lax-a-day till your poops are the thickness of your thumb'! Great, till I get dependent on it

[little_blue_jay]

Wow, you've tried all kinds of stuff. I'm not brave and/or desperate enough to try suppositories yet!

Mostly I rely on spoonfuls of magnesium oxide.

Let us know how your echo goes - hopefully there'll be some good news there!