Thanks Mrs D but I have my levels monitored every month now. I have monthly B12 injections and my levels are now high normal.

I was told that the combination of very low copper with very low B12 in the beginning, is shown to increase the severity and permanency of the nerve damage. The damage is supposed to have stopped now but I have not had any improvement. It's three years since the gene mutations that cause this problem were found and I have been having treatment since then but I still have permanent damage.

I have no Babinskis reflex, and very increased reflexes in my ankles and knees. I have no position sense to my hips and no vibration sense to my hips. I have altered sensation to T2. That originally tested abnormal to T4 then worsened to C3 and improved back to T2. I was grateful this one improved because my doctor said C3/C4 keep you alive! (Something they learn in med school I think). They were a bit worried my diaphragm might be affected.


I go into hospital every month or so for 4 or 5 days for intravenous copper and steroids and this seems to be keeping it reasonably stable but I do get fluctuations in function and when my symptoms get worse I always worry that it's the start of a continuing downward trend. It does my head in!

I did a pretty long post in the spinal disorders thread where I got most of my frustration out

Hey Kitt, thanks for the welcome.

I'm going to be posting a lot because basically my life is pretty restricted and I spend most of my days on the Internet. I've lost count of the number of Scrabble games I'm playing simultaneously. I'm also a member of a Bone Marrow Forum because I've got bone marrow failure and had chemo for bone marrow cancer. I've been a member there for at least 5 years and they are wonderful people. Unfortunately due to the nature of the Forum we lose members regularly. It's been a bit sad there this last week or so because we lost three long timers. I've noticed after we have a bad run on that Forum it goes quiet for a while. It takes time for people to cope with losing long time Forum friends.

Pleased to meet you.

Talk soon.