First of all Happy New Year everyone.
Since September I have been generally unwell, with a myriad of symptoms, too numerous to mention, but one problem that troubled me most, breathing problems, and the feeling of being throttled.
3 trips to A & E, had me sent away with a range of dismissive suggestions, and I continued to get worse.
My GP was becoming increasingly frustrated, as was I, so I paid to have a private thyroid scan to see if this accounted for my issues, and my GP ran a full thyroid panel. My scan showed multiple nodules, deemed non-suspicious, and thyroid panel normal.
In amongst all this, my lymph nodes in neck, armpits and groin have become enlarged, and stayed enlarged, the groin ones particularly very uncomfortable, this has been the case since September.
Fast forward to 23 December, my breathing became worse, accompanied by severe chest pain of the stabbing variety, my husband called an ambulance and I was taken in. Diagnosis pulmonary embolisms, with enlarged lymph nodes behind the heart. I was started on Heparin injections into stomach and continue this at home.
I was taken in again on Boxing Day, diagnosis pleural rub, and pleurisy, and enlarged lymph nodes.
Opinion is divided, is this Lupus or APS driving this, but in any event, I have an appt with Hematology tomorrow, which I had pre-arranged because I was concerned at my continual high Cardiolipin and Beta Glycoprotein markers, and the fact I was on no thinning medications due to them being stopped, as they were causing me stomach ulcers, and blood in my stool, so was looking for advice, irony now being of course I have had an event.
Regards the enlarged lymph nodes, my GP put me on fast track pathway to ENT to get these looked at, this is the day after my Hematology appt, so two heavy days at the hospital.
I usually take all things in my stride, and am not easily spooked, but this has shaken me up, mainly because the young A & E doctor who did bother to send me for CT with contrast, was graphic in what could have happened to me left any longer, and I am now struggling that I have been suffering for weeks, and simply was not taken seriously. I know these things happen, they shouldn't, but I now find myself totally lacking in confidence in the very people who are supposed to help us.
I am naturally concerned about the lymph gland issue, Lymphoma is swirling around my head, not helped that I feel so absolutely wretched, my body has spectacularly crashed on me, and my mobility is seriously bad, due to pain.
I know no-one has any magic answers, for the first time since diagnosis I feel vulnerable and not going to lie, scared.