Hello to all!
We've returned from this morning's hospital visit exhausted and unclear as to the way forward, but were hugely reassured to receive a further follow-up appointment through the post for tomorrow morning!
In brief, Mark is doing well. He's gaining weight suitably, his appetite has returned and he's enjoying food (Alleluia!), his temperature has remained normal and his heart rate appears to be going down/being regulated by beta blockers. He still struggles with sleeping as his shoulders give him a lot of pain, but the overall outlook is very promising! He managed a long (very slow) walk up Cleeve Hill on Saturday (wasn't it a beautiful day too!) which he thoroughly enjoyed and was so pleased to be able to do.
As a result of this mornings appointment, the Consultant feels that there is a strong chance that Mark has a disease known as Adult Onset Still's Disease (AOSD). This is a very rare disease and unsurprisingly, is hard to diagnose. Certainly, Mark's symptoms over the past 6-8 weeks tick off all of those expected. The next step is for Mark to see a rheumatic/arthritic doctor - which we are doing tomorrow morning at 9am. He/She should be able to make a decision about whether to start treatment, and indeed which course of treatment to follow. It seems likely that this will be steroids and Mark is not too happy about that because of the side effects associated with them. However, this is not something to dwell on for now, we will no more (I hope) tomorrow.
I/Mark will update the blog at some point tomorrow with the results/decisions made. In the meantime, we send you all our love and many many thanks. Your comments and words of support continue to give Mark strength and pull him up when he's feeling down.
Thank you Ruth x
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2 comments:
yo boyo
i was on the dog n bone to the bread knife today. thats all i know of that cockney speak thing so back to normal. mixed feelings about the still's thing. look forward to seeing you soon. well done on the walking. your the daddy. gota keep positive.
love you.
sherpaneehow
Wow Mark, although it's good to have a diagnosis, it's tough to find out it's this.... I hope you continue to feel better and have more good days than bad. Hugs from Tracy.
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