Kate, diagnosed with MDS RA-RS in July 2020
I am fit and healthy! Well... so I thought!
I'm Kate, 48yrs from Yorkshire, recently diagnosed MDS RA-RS in July 2020 - found out by complete accident as I had no symptoms.
January 2020 - went to the Dr as my chiropractor asked me to get a blood test to check for inflammatory markers - I had an ongoing severe muscle spasm in my shoulder. I think she was thinking rheumatoid arthritis or some other issue - I have arthritis (shoulders/hips) but that's mainly wear and tear and have other joint issues as I was a jump-jockey in my younger years - fell off a lot at speed! Self inflicted torture? depends how you look at it 😜 .
Anyway - the bloods came back anaemic but with higher iron than is normal - so by March 2020 I was having another blood test - I wasn't worried - didn't have any symptoms and was just a bit tired sometimes. I am currently a Pilates Instructor/Personal Trainer so I am fit and healthy! Well... so I thought!
Then we went into lockdown - I did push my Dr to redo bloods - she said I had large red blood cells but thats all I was told. So I then asked for a hospital appointment as I wanted to know why .... eventually was referred to Harrogate Haematology on April 2020 - this was cancelled until July because of Covid. By July I was slightly worried but I felt ok. Still no symptoms just a bit tired.
Diagnosis day 16th July and I was utterly floored!
After a phone consultation, they got me straight in for a bone marrow biopsy the next day! and more bloods and then I had a 3 week wait which was terrible. I was now very worried and thought I had some sort of multiple sclerosis (not sure why - must have been googling) Do not do Dr Google!
Diagnosis day 16th July and I was utterly floored! I really didn't have any symptoms but once I was told I was anaemic I sort of became it! The Macmillan at Harrogate were so lovely and really helped me the first few weeks - I was all over the place 🙁 .
So I have MDS/RA-RS large red blood cells - too large and iron over normal levels but still anaemic - no treatment just a watch and wait.
In August I went to visit the awesome Professor Bowen. I felt so much better having seen him
By August I had got my head around it all and went to visit the awesome Professor Bowen at Leeds Centre of Excellence. I was terrified! He could see I was terrified and put me at ease straight away. I got my bloods checked again and this time I wasn't anaemic - madness.... we had a long chat and I felt so much better having seen him face-to-face. I am currently still watch and wait.
December 2020 and March 2021 bloods remain stable, still slight anaemia. I am now doing more exercise than ever! I am determined to keep as fit and healthy as I can and can honestly say I have never been scared of anything until last July!
I haven't let Covid stop me working and I am now teaching online (ZOOM) pilates to a few small groups - I am happiest when I am helping others.
I am a lower back pain focused teacher and have several clients who have survived breast cancer and some who have managed to reverse their osteoporosis.
I have not shared my condition with my clients just yet as I feel they will treat me differently and it hasn't affected my work. I do have tired days and sometimes breathless but I am not sure I would have noticed if someone hadn't told me !
I often do charity events and have recently been running every day for the January RED that I do annually - I did manage to raise £350 for MDS charity for my last birthday and will continue to help when I can. I have really valued the Facebook group and zoom cafe sessions - I no longer feel alone with this mad disease, so thanks for the comments online.
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