I'm still waiting for a hospital appointment for my hand, now reached to my shoulder. No feelings at all now in the last 3 fingers, can't close the hand no more, the nerve pain is now reached up to the shoulder. Telephone hospital, they have advised to get back in touch with my GP as the appointment team has sent it to the neuro surgeon but as they have not had an appointment yet, it's now up to my GP to get in touch with the surgeons themselves. It's been almost a year now, and I'm not now suffering with my hand but my RSD has kicked in real bad and I've also developed a thrombosis due to my APS. My legs are now black up to the knees, I'm now in a lot of pain but I'm on so much painkillers, and a few antidepressants (for my RSD), also my iron is low & Vit B. My allergies are bad now how to carry an epi-pen. My IBS has gone haywire, (just put me down). Oh nearly forgot, the osteoporosis (which I don't remember ever being tested), but due to readings in my blood, the pointers, as they say, are high so I have got osteoporosis. (I don't get it).
I've told my daughter to be re-checked for APS, but they are adamant that she no longer has it. I've told her to get a second opinion, hopefully I can see if Dr Cohen can see her at UCH.
That's me up to date, and I just don't no what where how to cope with all this any more.
Yours frustrated friend