I was diagnosed with MDS RCMD in October 2010 following a move from Lancashire to East Sussex having retired a year before from a busy job. Whilst in Lancashire I had been battling with very bad eczema , which came out quite suddenly and all over my body and this was being treated by a Dermatologist. Whilst all this was happening I had several blood tests with showed irregularities but this was not thought severe enough by the Haemotologist in Lancashire, for whatever reason. The eczema eased following various treatments and prior to our move I was given a steroid injection. Not long after settling in our new house, I started to suffer from Cellulitis in my legs because of still having some open wounds from the eczema on my legs. This was very painful and debilitating and as a normally active and fit person I found very difficult to deal with. I was put on antibiotics and was sent for a blood test which showed low haemoglobin and neutrophils etc. therefore my GP made an appointment for me to see the Haemotologist at the local hospital. On the same day that I went for my appointment the Haemotologist arranged an X-ray, CT Scan and also carried out a bone aspiration and biopsy! Another doctor took a biopsy of a couple of the eczema areas just to test there was nothing else going on. When I went back to see him he confirmed I had MDS RCMD which initially took the wind out of my sails but then I thought - this is what I've got - deal with it! I still suffer very bad cellulitis alternatively in both legs, eye swelling and pain like neuralgia which affects my jaw and eating and also my tongue gets ulcerated which again is very painful eating and when swallowing. My sister and I went to New York in January 2012 to look after her grandchildren for week and my right leg decided to swell up with cellulitis so I immediately started taking my antibiotics which I have a supply of now. I was not going to let this get me down because we had so much to do and see so kept positive and managed all what we had to do apart from one day when it was raining so I elevated my leg and we chilled out. When I got back home I was fine then picked up a very nasty virus, various doctors came to see me and I was bedridden for 3 weeks with chest infections and feeling generally very ill. Since then I've had two more bouts of cellulitis and an eye infection, together with stiff jaw, neuralgia, etc. I'm due to see the Haematologist again on Tuesday 1st May so keeping my fingers and toes crossed. I take B-vits every morning and drink some lukozade during the day, especially when I feel tired. My daughter who lives in Lancashire is very supportive and advised me to put a post on the forum and told me about the book which I've just ordered from Amazon 'MDS -100 questions and answers, so will read with interest. I go to Cyprus with my sister on 9th May for 2 months so looking forward to the sun, salt water and relaxing. My sister, who lives in Surrey, is very supportive and we email and talk to each other regularly. My partner of 36 years is very good and looks after me, cooks, cleans when necessary and shops but he doesn't fully understand what it's all about and doesn't seem to want to know. I think he is probably frightened at the prospect of me being ill and he keeps himself busy looking after the garden.
I was particularly interested in the tea tree-based antiseptic cream with aloe vera gel so thank you for that and elevating my affected leg (which I already do when I can) . My appointment went well mainly because I had listed all my cellulitis and other infections since the last appointment and I had also put all my questions at the bottom for the Haemotologist to see. He kept his copy. This way I did not forget to ask him anything. My haemoglobin was much improved and my neutrophils had risen a bit which was very good news - these took a knock back when I suffered a virus in February. He has also written to my GP to make an appointment for me to see a Dermatologist for my eczema outbreaks and when I get back from Cyprus he is starting me on a G-CSF course to see how I get on with that. He also arranged a blood test on the day to test my autoimmune in case I need B12 - it seems he had missed doing this before but because of the return of the eczema he felt it worth doing. I felt I was getting somewhere and was relieved that my condition hadn't worsened. I go back to see him in early July when I get back from Cyprus. Would you believe it the Cellulitis started up in my left leg the day after I had seen him so I phoned my GP who advised the usual antibiotics which I am currently taking and he has prescribed enough for me to take away just in case of any problems. I've started another list! I'm always very careful with my diet, I never touch anything undercooked and very careful to wash everything thoroughly and drink bottled water. Because my sister has an apartment in Cyprus we do eat in a fair bit and she is very careful and looks after my diet very well. I wear beach shoes when swimming in the lovely salt water which helps my eczema, I'm also very careful to wear a high factor suncream and hat when out in the sun. I don't swim in the pool because of the chlorine. I found the book extremely helpful which also gave dietry advice so have taken that all on board. Thank you again for all your advice.