My copper level is well within normal levels (23...13-25) but my ceruloplasmin is still very low (no number supplied
).
I am getting worse neurologically. I have been getting worse slowly over the last few months but the rate of deterioration has increased. I have severe pain in my hands and feet which feel soooo cold they are burning numb. My legs have stiffened again and I'm having trouble bending my right leg at all, my feet have turned in and are pointed. I've only ever had loss of sensation, clumsiness and weakness in my hands but for the last couple of weeks I've been having spasms/cramping where my fingers want to bend backwards and feel like they are about to break. My face has started getting random twitches and I get sudden bouts of vertigo which make me sick.
The new haematologist has made it clear he won't monitor my neuro condition so I haven't spoken to him about it. I've gone to my GP and he is happy to
prescribe and monitor blood levels of any drug that a neurologist orders. There's the rub......my old neurologist says that there are no drugs that will help and that I'm going to get worse...he is no help at all. I've tried to make appointments to see other neurologists. In the public hospital system it will take 2 and a half years to get an appointment. Some private neurologists have closed their books and not taking new patients, some are taking appointments for next April or May 2013 and the one and only one I can get to see this year (28thDecember) is on Wickham Terrace in Brisbane and because I'm now in a motorized wheelchair that really isn't an option. Logistically, I just can't get there.
My usual neurologist has been extremely pessimistic about my prognosis from
the start and he has told me numerous times that I'm going to die a horrible lingering death (his words). I desperately want another opinion from someone with a less pessimistic personality (am I just being in denial?).
This neuro told me that while I have low ceruloplasmin levels I will never be able to utilize the copper even if the blood levels are high and that's why I'm still deteriorating neurologically. If this is true, then, why is my bone marrow able to get the copper and function normally ?
The GP told me that marijuana would be good for my symptoms but it's illegal here. I've never had an illicit drug in my life, I've never smoked and I drink moderately on occasion. I don't move in circles where I even know anybody who uses marijuana let alone where to get some. My 85 year old Dad thinks I should try it by baking it in biscuits but my upbringing, my fear of drugs and the fear of being caught makes me very reluctant but it might be a better option than taking heavy duty narcotics and relaxants.
I feel so lonely in this disease, I really don't fit in to any support group and even the doctors admit to knowing very little about how to help me.
Feeling very down today, but that's how I feel every time I've had anything to do with my neurologist.
Sorry to whinge.
Regards
Chirley