[Chirley]

Hi,

I don't know the name of the metabolic problem that I've got. I'm still being treated by my haematologist who consults with my neurologist who is advised by the Prof of metabolic medicine. This means that everything I'm told is third hand.

I know I have something called human swayback (I hate that name) which is myelopathy (demyelination) caused by copper deficiency and I can no longer walk unaided. I have also been told that I probably have nephrotic syndrome because 24 hour urine tests not only show large amounts of copper but also large amounts of protein as well. Apart from telling me about it, nothing else has been done about it.

My neurologist tells me that the Prof says I would have had this all my life and that I'm extremely lucky not to have problems when I was younger. He describes it as an adult version of Menkes Disease and he actually got 3 other neurologists and a medical student to come and examine me and ask me questions because what I have is extremely rare and is the only case they have ever seen. I was told that I'm going to be cited in a medical journal article. I asked for royalties, ha,ha.

Whatever this disorder is it's supposed to cause other problems as well. I've been told that it's the reason I've lost all body hair, why my hair has gone from very straight to fuzzy. It causes skin problems i.e. grey skin, wrinkles, slow healing. It causes joint/tendon pain. It can cause vein/artery problems like aneurisms etc and it also causes bone problems. In fact I've been told that I'm at extreme risk of having a pathological fracture with the slightest fall or bump.

All in all, I think I'd almost prefer to have straight out MDS. At least there are other people out there with MDS and I have felt supported and comforted by the people on this forum. I don't know my long term prognosis and I'm feeling very alone.

I probably won't be seeing the Prof of MM until March (at the Childrens' Hospital - how embarrassing) and will get a chance to ask more questions then.

Hope you keep on responding to the Campath. Good luck.


Chirley