If you’re a regular reader you’ll be aware that my health has been somewhat of a nightmare for a long time now. You’ll also have noticed that my posting has become even more sporadic than it has been in a long time. You wouldn’t be wrong to assume that these two things are linked.
My last health update was quite a hopeful one, not hopeful in terms of not being ill, that boat has sailed, but in terms of finding out answers, I didn’t have any yet, but I really thought I was close to understanding what was going on, I was wrong. If you’d like to see that post, to further understand the back story, you can find it here.
I’m going to try to keep this as, relatively, brief as I can but it’s long which, I appreciate can make it hard to read, but I promise it makes it a bit rubbish to live through too. I’ve put a super quick summary at the end but for more detail keep reading.
|My new ‘Health Folder’ as a way to get everything in order and take back some control of how all over the place everything is
I still haven’t seen my neurologist again, he’s still deferring to my rheumy. Rheumy has ruled out Lupus but not, totally, ruled out sjogrens but unfortunately the next set of testing hasn’t happened (which I’ll be bringing up at my next appointment). The big shocker, though, is that I don’t have antiphospholipid syndrome, it really seemed to be something that made sense but the second set of blood tests came back clear. I still have various borderline blood tests but no real answer for any of them yet.
Gastro did one big, very unpleasant, test which came back clear so he discharged me. We didn’t discuss any other causes or tests, that was it. Which was a bit rubbish.
Due to Lupus being ruled out I was advised to go back to my GP regarding chest pain which ended me up in a+e. They didn’t find anything but ruled out some scary stuff, which the subsequent echo cardiogram did too. The pain, in addition to the fact that I’ve been having a rather large rise in heart rate, during day to day tasks, has led my GP to wanting to send me to a cardio urgently, unfortunately the wait is 6-12 months, locally, and GP didn’t want me to wait that long so I am off to Bristol which is pretty far afield for someone who rarely leaves the house, but needs must.
Upon deciding she needed to refer me to a urologist (because who doesn’t need yet another consultant?) I opened up to my GP about my concerns with having so many consultants, about having such a wide range of people seeing such tiny parts of my puzzle when there’s a high chance that things are linked and she agreed. She said, unfortunately, that there isn’t anyone on the NHS with whom I can sit for long enough to tell the whole story to but she could recommend a local private doctor who may well be able to help.
The GP I’m, currently, seeing is wonderful. She listens and she cares and she said she understood how hard this all is but that she really does think something is happening and it’s only a matter of time until we work out what it is. She thinks this is more than fibro and she hopes that this private doctor will be able to put all the puzzle pieces together for me.
So there we are, in summary:
– Still nothing from Neuro.
– Rheumy is running out of ideas.
– Gastro was no help.
– Lovely GP is lovely.
– Urgent cardio soon.
– Private doctor will hopefully have a flash of understanding and know all the answers soon.
I am wary of being too hopeful, now, but I have to hope a bit and this private doctor will hopefully be able to get things back on track. Here’s to a better update next time.