Hi all and thank you Maz for accepting me onto the forum. I do wish I had come across you when I was first diagnosed back in 2008. I’m sure it would have helped me more with understanding and accepting my condition better.
A month ago my new Haematologist, the previous one has now retired, suggested, for a few reasons, I retake a BMB, 1, my haemoglobin levels have been on the low side consistently at around 121- 117 for as long as I have been under her care, which is almost one year. 2, the previous BMB, back in 2008, could not be used conclusively to rule out pre fibrotic MF. Also recent blood test has shown me to be CAL R Positive and a recent CT scan of my Spleen has showed up to be 15cm. I’m now waiting with a brave face about what the future holds for me. Especially after the trainee Haematologist who carried out the BMB struggled to extract the bone marrow 2 times and said its “probably due to fibrous marrow,meaning MF”. But whatever it is, I am determined not to let this condition get the better of me so I can spend as long as I can with my lovely family.
After reading many of your posts I feel encouraged to learn more from you and together with you to make a difference. But at this time I am going to be playing catch up with understanding this condition.
So for anyone that can assist me with 3 main symptoms that I have and anyone may share with me.
1 - does anyone have poor tolerance to exercise. Mainly Impact exercise causes delayed post exercise fatigue and headaches and unable to build up stamina or strength.
2 - aspirin caused a stomach ulcer and Anaemia - has anyone tried copidogrel, how did you get?
3- Lots of food sensitivities causing bloating which may also be causing my lower back issues. I have been diagnosed with irritable bowel syndrome, but this diagnosis doesn’t sit right with me. Maybe it’s because this is a tuff one for me, as I still have a very healthy appetite. 😊
I will keep you all posted with my BMB results.
I could go on but these are the main ones I’d like some help with. I’m learning a lot form the post on this forum.