No Medical Help!

[suzy66641]

Is it just me or do any other sufferers feel cut afloat with no medical help. I go to see my GP very rarely but he has no knowledge of Scleroderma although I have been seeing him for the 12 years I have had this illness. I have a rheumatologist who tells me as I have had repeated courses of Iloprost with little success there is nothing else he can offer me so no point even seeing him anymore. i have in the past been treated at the Royal Free who are excellent but I seem to have lost touch. I have badly affected fingers (no fingertips left) and am suffering with bad leg ulcers but just muddle along with the help of an ulcer nurse but no speialist help. TBH i am totally disillusioned with the medical profession {(

[Hidden]

My GP is a total = pillock. I wrote to him in November and explained could he live 24/7 365 days with hands and feet wrapped up in barbed wire and then plunged into ice and water. Then just as you think they are about to recover plunge them back in to the water again or just for good measure really make sure the barbed wire is sticking into you. Sorry I can't be of any help - I don't have any myself.

[suzy66641]

Hi CardiffLady thanks for replying. I read some of your messages in regard to time you had waited for appointments etc and it sounds like a joke although I know that to be in pain 24/7 is far from funny! Nice to hear from you anyway and I hope things improve for you very soon xx

[Hidden]

I have in the past emailed professor Denton myself - i cant remember what the email address is now, but i found it on the internet. He is very helpful (the lead in Scleroderma UK), and may offer you advice on what to do. Failing that, i email the lead at the local hospitals and ask their advice on what i should do. Hassle!

[zenabb]

Don't give up. Iloprost dialates all the blood vessels as much as possible and you need blood to go to your ulcers to help with healing (that's what blood does). You need the help of Iloprost if possible on a regular basis. In the winter I have it every 8 weeks and less often in the summer. I always make sure that they give me the next Iloprost date before I leave. Other symptoms are dealt with on "an as you need it" symptoms, usually by your GP.

[graygirl1]

If you were getting the help you need from The Royal Free Hospital, why not ask your GP to refer you again to that team. I am sure they'd be happy to see you again. If your GP refuses or is reluctant why not try to find and register with a more sympathetic doctor.

Personally, I would call The Royal Free Rheumatololgy Dept., explain why I'm calling and see if they would allow me to "self refer". They have your files and you should have your hospital number, date of birth, address and so on to give.

Try to be positive, hang on in there, there's much help to be had. The RSA is brilliant for support and information. I've just found them.

Good luck!

Graygirl1

[suzy66641]

Thank you all so much for your advice. I am going to contact Prof Denton as hes always been kind and understanding to me in the past. Just know I cant carry on as I am xxx

[BarbJ]

HI suxy6641 - I agree with graygirl1, call the Royal Free. I lost all faith in my local hospital when they no longer had an expert in the rare connective tissue diseases and I had to see a consultant with 'an interest' in them. I soon lost faith in him and after I'd been assured twice that my overdue echo had been requested only to find that it had not I had had enough. As luck would have it, just around this time I overheard someone in the staff room talking about this same consultant (not in a complimentary way) and got in conversation with her only to find out that she was desperately trying to get her sister (a lupus sufferer) to find another consultant. She did change hospitals soon after and that gave me the courage to ask my GP to refer me to a hospital where there is a scleroderma specialist - I am of an age where a lot of us still have that fear of "offending" doctors and then being 'blacklisted'.

My GP was happy to do so, and I am so glad that I asked .. it's quite a long journey to get there but the staff are fantastic and the treatment is fantastic (more comprehensive tests, appointments in different departments co-ordinated so that they are on the same day and with no long waits inbetween). I cannot praise the hospital enough (Salford Royal). If I ever get so ill again that I need to stay in hospital I will drag myself to the station and get on a train to go there rather than go into my local hospital.

So by all means speak to Professor Denton but please, if you can, pluck up the courage and ask your GP to refer you.

Good luck.

Barb J

[alwaysfreezing]

it is very frustrating when a GP seems to be giving you the brush off its a horrible condition and the different conditions you get with this illness should be made aware more for the public good luck