[Chirley]

HI,

I thought I'd post an update for those I haven't kept in the loop. Turns out I have a metabolic disorder which prevents me from absorbing copper and also causes me to excrete copper in my urine. The Prof of Metabolic Medicine that I saw thinks I have had this problem from birth and have been very lucky not to have health issues a long time before this.

This copper deficiency initially caused anaemia which on the surface looked like iron deficiency because of a copper/iron chemical interaction somehow (I'm ignorant of the nitty gritty chemical stuff). It then caused problems within the bone marrow due to lack of copper interfering somehow with the maturation/production of stem cells. This caused the RCC problems and low WCC as well. It also caused iron to build up in the cells and caused ringed sideroblasts and increased iron stores. It should NOT have caused my increased blasts and that remains a concern.

I have been having copper injections and my copper level has been normal for about 8 weeks now. My FBC has been almost normal as well and I haven't required a transfusion for 9 weeks.

I had and still have demyelination of the spinal cord in the cervical and thoracic spine. This was caused by the copper deficiency and neuronal/nerve death. I was told after my first MRI (I've had 3 now) that I also had white matter lesions in my brain, this has not been mentioned to me again. Consequently I have a grossly ataxic gait and abnormal neuro reflexes and still need a wheely walker to be able to walk. The thinking is that I'd be very lucky to achieve any improvement but I'm optimistic. My GP says the neuro problem is very similar to Multiple Sclerosis in its’ effect.

Only other issue at the moment is increased liver enzymes and mildly enlarged liver. My haem doctor seems reluctant to blame the liver problem on my ferritin which is 4,700 at the moment. So, it's off to a hepatologist to see what the problem is. The only symptom I get from the liver is a dull, achy, heavy feeling under my ribs front and back on the right side.

I had a BMB today to see if I really have MDS or whether all the haem problems were/are copper related.
FBC today was.
Hb 122 (115-165)
RCC 3.8 (3.9-5.6)
WCC 2.7 (3.5-12)
Neuts 1.3 (1.5-8)
Plats 102 (150-400)
as you can see, they're pretty darn good but not quite normal which is the reason the haem doc is reluctant to say I don't have MDS.

Keep your fingers crossed for me. Getting results next Thursday.


Hope you're all remaining well.