[Cheryl C]

Dear jmajjb - How often are you seeing your specialist? Make sure you write everything down to discuss with him/her. It's easy to forget when symptoms are intermittent.

Things can change suddenly with MDS, but just to reassure you I also get hot at night sometimes (not menopause) and I sometimes get weird bone aches and pains for brief periods, other times I have weakness in my legs and other symptoms mentioned previously. I always have red marks from slow healing wounds, bites, etc. Sometimes I have a few hive-like spots on my torso. This has been happening for around 5 years now so here I am to tell you that you can live with it, and not just exist but live a productive enjoyable life. I really think these symptoms are probably quite common with MDS patients. Even my blood results can be quite inconsistent from month to month at times. It takes a while to get used to all of this but if you really do have lower risk MDS, as time goes by you will become more relaxed about it. When I have an extra low set of CBC results I start to wonder if something's changing, but I wait until I've had another couple of lots of results and if it's not a trend I don't worry.

Hang in there! Stress can cause low WCC and neutropenia so it's really important to try to relax. Daily energetic exercise with help with that. St John's Wort tablets are a natural anti-depressant and can help your mood and your sleep too - obtainable at health shops here in Australia.

Please let us know how you get on at your next specialist consultation. We all care about you.