I have Lupus with secondary APS and after nearly five years of suffering with excruciating pain in my legs, bleeding in my joints, strokes, TIA’s etc etc I finally went for a private consultation in Barcelona as I could no longer tolerate the lack of knowledge about both diseases at my local hospital. I have continually been told that I’m faking it, I have psychiatric problems, it’s all in my mind etc.... take 2 paracetamol and go out and enjoy life! Don’t they think I would if I could?
Anyway to cut a long story short I now have the results of all my blood tests from the Rheumatologist and the results from the Neurologist I saw privately in Barcelona. Basically, I’m falling to bits. Every major organ in my body has a dangerous and alarmingly high level of infection. The reason I have been wheel chair bound and unable to walk is because I have Mononeuritis Multiplex which has caused a chronic infection over a large period of time, because it has been left untreated, which has now caused paralysis in my left leg and partial paralysis in my right leg which is now irreversible. There is a question over whether they will be able to save my left leg at all The outcome of my consultation was a referral to a hospital in the centre of Valencia where there is an Autoimmune Unit with a Doctor who specialises in SLE & APS with cardiovascular complications. Great, I thought...... however, with the financial crisis here in Spain and all the cutbacks I cannot be sent to this hospital. I can’t believe it. I have been advised that I need Steroids and immunosuppressant medication urgently and not one person will write the prescription for me. I just can’t make the journey to Barcelona again it’s just too far to go.
I am fighting my corner as are the Doctor’s I saw in Barcelona and the Doctor I want to be referred to in Valencia. Unfortunately, she doesn't do private consultations. Hopefully I will get to see this Doctor eventually but in the meantime I don’t have any medication and still am experiencing chronic pain. I am sooooo tired and am feeling so sorry for myself at the moment I feel like I don’t have the energy to keep on fighting. Why are things made to be so difficult especially when we are all so ill? So if you could all keep your fingers and toes crossed for me it might just cheer me up a little.
Thanks for taking the trouble to read my blog. Love to you all from here InSpain xxx