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
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sorry to hear of the fight you are having to go thru. would sending a letter to this Dc. in Valencia or maybe a phone call explaining your situation.an your need for his/her help??? sorry thats all i can tink of .:-(- my thoughts are with you my friend -- please don't give up .you may have already done this trying to contact them . maybe the dc. that did the refferal can help ??------------------------------------- jet
I am so sorry to hear your story, I really understand, I have come away from hospital appointment today after going in with hope, and leaving in tears, reality has just hit me after all these years that there is no magic cure and I really do just have to get on with it and live my life in so much pain, on heaps of medication with side effects and still keep smiling!! Maybe thats why I fell downa flight of stairs in the hsopital car park as I was pretty upset. I so wish more people out there understood what we go through on a day to day basis, unfortunately these diseases are so rare that nobody knows about them. I feel your pain and I hope things get easier for you, Im trying to smile even after the day I have had so I hope you can. My gorgeous spaniel is looking at me for a big cuddle so Im sure she will bring a smile to my face haha!! Best Wishes Samantha xx
Thanks for understanding Samantha. I hope you didn't hurt yourself falling over? Tomorrow is another day, perhaps I'm just a little run down and tired today. xxx
Funnily enough that's my saying too 'tomorrow is another day' we got to keep smiling and focus on the good in our lives, you take care and rest up xx ps I am a little black and blue from my trip but all ok thank you
Hi there, I am so sorry that you are still having to push so hard, you have one last push to do, politely pointing out that due to neglect with your medical care and this has left you in this state, and how you do not wish to go back in time, but that they now must all collectively help you swiftly move forward to where you need to be, as otherwise legally speaking it will be costing them a great deal more in these stringent times, leave nothing out and mark it urgent copying in everybody who has been involved to date, and to whom you wish to see. Please keep us posted. Mary F x
Thanks Mary for taking the time to reply. It's strange how the hardest push always seems to be when I'm at my lowest point in energy! I have a whole cricket team thwacking the ball well and truly onto their turf at the moment, including my Lawyer who is shouting NEGLIGENCE in an extreemly loud and aggressive manner - pretty impressive really. My husband did comment that he was glad that he was our Lawyer and not the other sides!!!! See you've got me smiling already xxx
Yes lawyer and negligence is the spring board for reaching the care you need... you need to push hard for that care so they feel that they are bending over backwards not to be taken to court. Push hard, and call in every favour from family and friends, you are nearly there now, and good on you for fighting so hard, Great big hug coming your way. Mary F x
and hopefully they will get on with what is needed now and try to avoid dealings with legal teams which will be preferable to them, good luck. Mary F x
hi all just to add my support to the hughes army my daughter anna is a sufferer and life is very hard for her. she has a good gp and consultant but it is all hit and miss. me and my husband are very concerned for her it makes us very sad. love to all of you we will all continue the fight for recognition for this terrible disease xxxxxxxxxxxxxxxxxxxxxxxxand hugs
Correct!!!! I don't have a rifle like Captain Mannering but I think my Lawyer will be a better defense in a case like this don't you?!
I remember the phrase used by Jones: "They don't like it up 'em!" #HughesArmy !!!!
I can only echo the comments of all above - so very sorry to hear that you have suffered for so long without support. We are all rooting for you here and hope that between you, your legal team and the doctor you can move this forward to put you in a healthier place. *hug*
It really is great to read everyone's comments of support above, even though I don't know any of you it's so comforting to know you all understand the challenges we face. I don't often post on here and don't always find the time to log on but reading people's messages above make me think I need to make the time more often as it has truly motivated me to know other people understand, thank you x
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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. 
xxx
Been feeling really bad for a long time.
feeling a little sad.
Looking for some help, feeling very lonely 
It has been 20 years this year - feeling sorry for myself!
INR 4.2 and black and blue marks with APS
