Hiya. A quick update.
I've been poorly since last December. I spent Xmas in hospital after having what I call a "funny" episode - something that felt like heart attack (chest pain, lightheadedness, pain down the arm and up the neck) but proved not to be one, thank goodness. I've seen many cardiologists, have been to A&E many times because despite being discharged from the hospital as being "fine", I felt awful. I couldn't stand up without the room spinning with me, I couldn't breathe properly, any little effort (and that involved taken just the few steps to the bathroom) caused breathlessness and dry cough, my heart felt as if it wanted to jump out of the chest, and so on.
Until one of the cardiologists suggested POTS (postural orthostatic tachycardia syndrome). That galvanised me into action, because on reading the symptoms I realised that they match mine. So I made an appointment with a specialist in autonomic dysfunction in London - waited 8 weeks for an appointment despite it being a private one. The guy is in great demand, it seems.
On a superficial examination he suggested EDS III/joint hypermobility and some sort of autonomic dysfunction. He sent me to have specific tests to check autonomic response. I had those on a day when I didn't feel that badly - isn't that always the case.
I finally saw him again yesterday for follow up. The tests were more or less normal, save for one or two anomalies. He spent a lot of time showing me the results, while I was getting impatient thinking of how many questions I still had for him.
Bottom line is that I have mild POTS or a "tendency" to POTS. You may know that POTS is categorised in mild, severe, critical etc based on the number of abnormal tests one has. As these tests depend on how one fares on the day, you can imagine how impressed I was to be told all was mostly normal, particularly given how abnormal I've been lately.
Still, he's not starting me on any drugs just yet - he's told me to increase salt and water intake (the former helps to retain the latter, which for some reason POTSies don't seem to be able to do), to wear compression stockings and to use a stress ball each time I get vertical (to increase the blood pressure).
He's sending me for an upright MRI to check for Chiari malformation and for a neck MRI, both of those because my blood pressure seems to fall too much when I raise my arms - not that I've noticed.
He's also sending me to a physio specialised in hypermobility to advise on specific exercises.
By the time he finished, I barely had a chance to ask any of my questions. The message seems to be - go do all these and come back in a month. Firstly, if I manage to get an appointment in another month, that would be fantastic, it will probably be more like 3 months by the time I have the MRIs etc and given his waiting list. Secondly, I have already been increasing the intake of water and salt and although they helped, they didn't resolve all the symptoms. I still cannot walk too far without my legs killing me and blood pressure dropping at dangerous levels. I still have the terrible adrenaline surges and the dreadful dizziness. And so on.
Disappointed? Oh yeah. Enraged too. After seeing so many doctors and having so many tests, it has come down to assurances that all I've been feeling is really just a mild thing. Don't get me wrong, I'd be thrilled for it to be mild had it not for the skewed results. And yepee that I don't get to start a new drug. But I can't help but feel short changed.
Since then I've been busy making a list of things I didn't get to ask, so I can email him. At least that way I can refer to the list next time I see him. Meanwhile I'm continuing to drink loads of water and add salt to everything - yuk.
Thanks for listening xx