I have been given an official title of POTS. My specialist still thinks my low positive ANA is "incidental"😕. He's referred me on to a POTS clinic at a major teaching hospital locally. So it will be nice to be able to go by car to my appointments instead of plane!!
At this stage I'm inclined to accept that I may 'just' have POTS and attack my ongoing issues from that angle and see if we can get anywhere.
Also, I'm now 10 and a half weeks pregnant (with #5😥). Totally not planned! But interestingly I have a lot more energy than 'normal' at the moment. I'm just waiting until I'm past the first trimester to see if the nausea will go away as well (I didn't realise I had morning sickness because I've been feeling like it for the last 2 years anyway😉). It will be an interesting journey to see what differences pregnancy actually makes!
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I replied to you earlier but I'm not sure what happened because it didn't make it on here!
I haven't seen the POTS clinic yet (run by a Dr Chris O'Callaghan at the Austin and by all reports he is brilliant). I'm yet to hear from them for an appointment. Therefore, I'm not on any treatments yet. From whatI hear he's big on lifestyle management and will only medicate if desperate, which is how I like it.
So I may be getting in there and into the clinic at the Monash for bub simultaneously which will probably end up being a liason challenge. But I'm not too worried.
Oh I'm so happy you have an excellent dr to look forward to seeing and being treated by. I googled him just then ( of course 😗)! His profile looks to be very fitting for you. My other half is at the Austin as is his bro...and I could get the low down on this rather nice looking chap if you like 😉. I saw that Monash has a lupus clinic?! Maybe between ante nate visits you could linger near that clinic?! It might only be a research lab....do you know anything about it?
Do keep us informed ....it's been a long road for you and to get this far is an achievement.
Yes I had seen that there is a lupus clinic at the Monash. It is a public clinic. I haven't heard any feedback about it but the two professors who run it are world renowned apparently.
I'll have to perfect my lingering with angel eyes act😀!
😙it's excellent this site isn't it! How else would we find out juicy information?!
No S Hall isn't one of those. Although, a mark up for him he bulk billed my disaster appointment when I saw him! Not that he gave me anything worth paying for...😉
This POTS diagnosis IS a big official step in a pos direction...glad your treatment is local now 👌
You're really well informed...and POTS-expert medics are a special breed...between you all, any other aspects of connective tissue disorder & immune dysfunction can't be ignored 👍 & you will be referred for further investigations as & when 🤞
That's what I was thinking coco. If, when I get to him, he finds I have symptoms that don't quite squash under the POTS umbrella then he'll hopefully do further investigations of his own.
This Works...sometimes takes time....eg, my ⭐️ Rheumatologist needed nearly 3 years from starting me on daily hydroxy to adding pred + myco before she realised my Low Igs were chronic and needed immunology investigations & referred me direct....at which point we discovered I've had autoimmunity running alongside immunodeficiency all these decades. Now combined daily rheumatology + immunology meds have me feeling generally 🌈 "more ok" than I have since my teens 🤷♀️
Congratulations on pregnancy and getting a diagnosis of PoTS - hope both work out really well for you (I mean by this that the PoTS is well managed now it's been properly diagnosed) and you are supported extremely well from now on. Xx
Thank you twitchy. The doctor I've been referred to I've only heard brilliant feedback about from others who have seen him so I'm confident I'll be cared for properly!
Well done with POTS diagnosis, hope seeing the specialist helps you greatly. It's quite similar to lupus I with some symptoms so will be interesting what he says and recommends!.
Congratulations on your pregnancy news. Hope all goes well for you. Keep us posted and take care. X
Thankyou for your kind words Misty. I hope I can get some help from him. First off, I want to get into some specific POTS related lifestyle management while I'm waiting for my appointment. Get myself a head start! Things like drinking electrolyte drinks and small bits of exercise (I've been warned not to exercise unless I'm lying down🤔so that bit will be interesting). Also just adding small amounts of extra salt to my meals (don't want to overdo that one because my sodium levels were fine when I had them tested a couple months ago). At least he can't say I haven't tried!
That all sounds like a very good plan!. Good luck with it all and for your appointment. There are quite a few sufferers of POTS on forum so please stay and keep us updated. Fingers crossed for you. X
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