MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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Treatment of MCTD/SLE

Kristina1
Kristina1
I am wondering whether I am isolated with this, but all my life I have had problems to receive medical attention when I needed it most. No doctor seems to want to deal with SLE (Systemic Lupus) and Mixed Connective Tissue (MCTD) and the medical problems arising from it. For example, I am now in end-stage-renal -failure (from blood-tests I have done privately, which my husband and I discipher with the help of the internet because we cannot afford private medical care, we know that my kidneys only work now 9-10%). In April 2005 I was sent by post a medical letter stating there is no specialist for me here in the UK. By law I am entitled to medical care, but in the past whenever I went to a doctor for medical help, they asked ME what I want THEM to do. That was always their get-out-way, so, officially, on the books it showed they saw me, but from their reaciton to me I had no benefit of seing them at all! I am not medical and cannot tell a doctor how to treat my MCTD/SLE., but I could not ask them for medical advice either, and that is why I have suffered in the past cerebral haemorrhages, a CVA-stroke and now I am in end-stage-renal-failure without any medical care at all. If I only once would have received professionel medical care, nothing of this would have happened. Is there anyone who knows how to handle such a situation? No solicitor takes my case either and there is no authority in the UK I can turn to, have tried Ombudsman etc and they could not find anything wrong with my situation, because there is no care anymore. There is no pressure-group here and I am isolate. I am sure that my end-stage-renal-failure is due to an untreated MCTD/SLE-flare-up and I desperately and urgently search for a doctor to put a stop to this flare-up which is destroying my kidneys. I would appreciate if anyone could give me some idea? Thank you. Kristina1.
schmidt56@yahoo.co.uk
MToennis
MToennis
Living in the U.S. it is difficult for me to help you find the right medical help. But, how about going to a medical DR and asking for blood work to define the extent of your kidney disease then requesting a kidney specialist and see if he or she can help you. Maybe the right Dr can figure out a way to get you the help you need. I wish I could help more. So sorry you are going through this.
Mary Ann
Kristina1
Kristina1
Thank you Mary Ann for your kind thoughts. The levels of my blood-tests which are done privately, point out that my kidneys only work ~9-10% now. I need to see a specialist who can treat me to stop my SLE/MCTD-flare-up destroying my kidneys further. If I would go to a kidney specialist that would not be helpful as the kidney specialist treats not my MCTD/SLE-flare-up and my kidney deterioration is due to the MCTD-SLE-flare-up I am suffering from. I need to urgently find an SLE/MCTD-specialist who can stop this flare-up destroying my kidneys further. I have no choice and if I have to travel to safe my kidneys I shall gladly do it. I have been assured by a medical letter from the Medical Chair of my Health Authority that there is no specialist in the UK for my rare combination of MCTD/SLE and other complications.Thanks for your thoughts, it is very much appreciated.
deleted_user
deleted_user
Wow, I wish I knew how to help you. I'm sure I don't understand all the details of your case, but I think I would either go ahead and get myself to a kidney specialist and see what his recommendations are. I realize you're saying he won't treat the SLE/MCTD, but he could help you with your renal function, and then you could ask him to refer you to someone who could help you. I'd take the letter from your Health Authority and demand that they refer you to a specialist ASAP whether it be in the U.S. or whatever country can help you. Have you tried contacting anyone here in the States about this dilemma? Maybe the American Medical Association? Here is the url: http://www.ama-assn.org/ There is surely someone who will be willing to help you. I'd also contact the American Autoimmune Related Diseases Association at : http://www.aarda.org/

I'd do an exhaustive internet search using search terms such as "patient advocacy" "patient rights", etc.

Please keep us posted, and I wish you the best! I hope you get treatment soon. This is just so unfair.
Kristina1
Kristina1
Thanks TWAC for the information, I shall contact all the addresses you suggest first thing tomorrow morning. Perhaps I have some luck; Thanks again and kind regards from Kristina1
dawnc4t
dawnc4t
Hi Kristina ,very sorry to hear about your medical situation I am in the Uk and luckily in the Midlands I come under Dr Bowman he is a specialist whom deals with mctd and sjs and is an ecellent rheumatologist .In fact the whole team is perhaps you request to see another Dr or get a referral on the Nhs for a second opinion. I see numerous consultants so I do understand what your saying when you get one that is most unhelpful .I had that experience with the neurologist who told me "what do you expect you have mcts when I was referred to him re the numbness diziness and migranes .It was a saddening experience which upset me but you know what he is just a bad apple .Keep pushing and pushing and good luck sweetheart
Kristina1
Kristina1
Thanks Dawn for the information. I shall find out more about it and thank you again. Kind regards from Krisitna1.
Kristina1
Kristina1
Dear Dawn4t, Thank you for your thoughts.
Specialists divide their work into two clear areas: firstly research (trials, papers, etc) interests and secondly their clinical treatment of patients. Today these two areas of interest go hand in hand through the career of every specialist. Because of my medical history I would not being considered as research (trial) material for one reason or another. Therefore, all that is left for me is what treatment a specialist will offer me. This always follows safe-guidelines and so far treatments offered have not been successful. Many specialists, even eminent rheumatologists shy away from my situation because I am not a positive gain with regard to the two areas of their work.
What I need is a specialist to give more thought to my medical situation in its entirety and to come up with new possibilities (variations) which might be either successful or help me to keep my kidney-function for a little longer.
I dont quite know how to explain this better, but I feel I need urgently a specialist who takes that little extra time in thinking in order to take a small step further without being too reckless or irresponsible. Because of my medical history and complicated disease pattern I fall outside of normal research (trial) and treatment. Perhaps I am asking too much, perhaps I am looking for a character that does not exist in the medical world, but I owe it to myself to try and find such a specialist. Thank you for reading this.