Good news. I've lost 3.4kgs since yesterday morning. I'm still swollen but a lot more comfortable.

I really don't understand what happened. I've had lots of IV steroids in the past and I've had a bit of fluid retention but nothing on this scale before. I'm just grateful that it has started to shift.

Really happy for you Chirley! I hope you have continued improvement.

Thanks almost back to pre hospital weight. 5kgs of fluid gone....I feel so much more comfortable. It does make me a bit wary of my next lot of treatment but at least I have a really good physician who will listen if I tell him I only want 4 doses in future.

I'm having other problems which I don't understand but are very worrying. I have daily headaches (never been a headachey type person) which aren't severe. They last from waking until mid-late afternoon and are accompanied by tinnitus, sudden, severe lightning vertigo attacks and a feeling of spaciness or confusion. I also have times when I can't communicate...I become non verbal...I can't remember how to talk..it's difficult to explain. I've always depended on my left leg to help me walk inside my house but over the last 6 months or so my leg has become increasingly more "dead" with increased neuropathic pain. I had hoped it was caused by a fracture in my spine but the MRI showed no pinched nerves from my fracture. When I was in hospital I had my first Neuro exam in over 2 years (by Registrars doing their exams) and I noticed that my proprioception has worsened in my left leg since last exam and I've now lost vibration sense to left iliac crest on the left side (I had only ever lost vibration sense to knee previously). So something is happening neurologically and it's not good. I was unable to remark on these changes to my physician or I would have compromised the Reg exams and I haven't seen him since then. I also heard them all talking outside my room about being unable to do the touch your nose and their finger (don't know what this tests or what it's called) and I thought I'd done it pretty well...I know I had a large tremor while doing the test which was new but it was surprising to hear that the test results weren't normal....I think that's new too.

I'm on the list to get on the list to wait for an appointment (make sense?) to see a neurologist at a public hospital. They tell me the waiting list is between 4 to 5 years and I'm starting to think I will be well and truly bedridden by then. I did wait 6 months to see a neurologist privately but she didn't even examine me...she just read my referral letter, told me she knew nothing about my disease and she wouldn't take me on as a patient. She then kicked me out the door and charged me $375.

You think you're safe from medical indifference/incompetence when you have Medicare and top Private Health Insurance but it guarantees nothing.

I'm off to see my GP this afternoon (I haven't seen him for a couple of months) and I'm just going to tell him that it's up to him and me to find out what's happening, why it's happening and how to treat it....because no one else is going to. I'm going to be very assertive because not being independant in my own home is my worst nightmare.

Neuro-tests
 

Hi Chirley,
Very positive that your kidneys function well!

Your increasing neurosymptoms with confusion and other brain symptoms, pain and problems with your left leg are no good signs.

The finger-nose.finger test is a test of coordination.
http://www.neuroexam.com/neuroexam/content.php?p=36

Incredible that a neurologist at a public hospital has a waiting list of 5 to 4 years! Too bad that you can't find a good neurologist privately. Hope you and your GP will be able to find info about what is happening to you!
Kind regards
Birgitta-A

I'm feeling a lot better without the fluid. My GP has ordered blood tests, a hearing test, an eye test and a CT head.

The hearing test showed hearing loss in both ears for low tones (I didn't know I had a problem). The eye test showed that my spectacle prescription hasn't changed but the retinal scan detected a pale retina with arterial vascular disease consistent with diabetes, increased cholesterol or hypertension. I don't have any of these conditions so I assume the arterial disease is due to the copper deficiency because vascular problems are a known complication. The optometrist is going to write a report to my GP. I had the blood tests today including a malabsorption screen. I'm having the CT tomorrow.

I think that by going to my GP and telling him that he is the person that is responsible for my Neuro disease (alongside my own contribution to my health) because no one else would take responsibility....he stepped up to the line and is trying to find some answers. I think he's doing his best.

Glad your GP is stepping up and looking into this for you. Hope you get some answers soon.

This is probably not the place for this but....oh well.

It's two days until the start of winter and it's about 24 degrees C. The sun has a lovely warmth without the usual desire to move to the shade. My old Betty has been lying in this spot for at least two hours. She's only about two meters from my dogs bone and my dog keeps having to guard the bone in case Betty eats it. The bone is the same size as Betty. Life can be difficult for dogs.

Pets
 

Hi Chirley,
Wonderful that you and your pets can enjoy the last fine days before the winter.

Since I often have low neutrophils I really shouldn't have pets but I have of cause kept my now 18 yo blue persian cat, Minou. Her mother, Felicia, passed away 2 years ago due to problems with her kidneys.
Kind regards
Birgitta-A

Oh - your cat's just inviting a lovely tummy rub isn't she Chirley! I reckon the therapeutic value of having a pet - especially a cat - really outweighs any worries about germs.

I can't imagine life without a pet but I suppose that time will come. Birgitta, I was too scared to ask about Minou. I remember you posted some time ago about her having eye problems.

I often wonder if (I forget her name) the girl who lives on a boat on the Thames, ever got a new cat.

Minou
 

Hi Chirley,
Thank you for asking! Yes, Minou has eczema over her eyes. She is probably allergic to some kind of food. She is too old and spoiled to only eat food without allergens. She is used to two kinds of wet food, the yellow from one egg and cream with water twice a day. I have excluded fish and she is perhaps a little better. She is treated with cortison so she doesn't scratch herself but the fur is still (after two months) very thin over her eyes.
Kind regards
Birgitta-A

Hi Chirley,

Came across this article on a copper compound used to treat ALS and thought you would find it interesting.

http://www.sciencedaily.com/releases...0612142352.htm

Thanks for that. I researched Cu ATSM and found this article http://www.jbc.org/content/286/51/44035.full. It's very interesting but I note they didn't do any other health studies, that is, side effects and that the mice were killed before any long term effect could be noted.

My GP recently wrote a letter to the Government stating that I had less than 24 months to live due to Neuro degeneration so at this point in time I have nothing to lose by trying alternative treatments.

I have an appointment to see a neurologist in September so I'll ask him to check out this research and see if he recommends some treatment.

In the meantime I've been started on a new tablet (an anti epileptic) to see if we can stop my ongoing episodes of partial blindness. Fingers crossed.

Chirley, sorry to hear about the latest setbacks. I hope you get to see a neurologist sooner than September though!

Cathy...so pleased to see you're still around. My situation sounds worse than it is. September to see a neurologist is a lot better than the four to five years wait in the public hospital system that I've been told I have to wait otherwise. I think this new tablet is working, I haven't had an episode of vision loss since I started it so I'm happy with that part.

The good news is that my ferritin has fallen to low normal levels and my liver enzymes are normal so I can now have occasional alcohol. So I have a glass of wine every few days and I thoroughly enjoy it. I feel like I'm living a bit more of a normal life and the one glass of wine seems to help with the spasticity and my leg spasms relax a little...it's a win/win.

Is Bruce still battling along?

Take care.

Chirley, I am so glad for your good news, especially about the tablet working. You have dealt with unimaginable setbacks, and deserve a glass of wine now and then. :)

We count out blessings that Bruce has been stable, and even a little improvement. During his annual consult in Los Angeles in November, the doctor suggested a trial of Procrit, even though his erythropoietin levels are OK.

Before the new regime, he was at a 4 week transfusion schedule, and had been at 3 week cycles at times, with a huge drop in Hgb the last week. One week, his Hgb dropped by nearly 2 points.

He's now had enough 5 week intervals that we can call it a pattern, without the big drops. He's not transfusion free but he feels pretty good most of the time, and that's what it's all about.

His favorite doctor quote continues to be, "You look deceptively healthy."

Sending a hug your way.

Cathy, I think it's fair to say that there are a lot of us that defy the odds. On paper the statistics don't look good and some are not very lucky but some (like Bruce, Birgitta lots of others on here and I) just keep hanging in there.

it's good to hear Bruce is doing well, please pass on my best wishes.

I'd better go my "baby" cat is trying to eat my iPad.

Hi, just wondering if anyone has heard of intra thecal copper injections to bypass the blood brain barrier just like they do with chemo?

My blood pressure is becoming a problem again and quite often has a systolic in the 80s or even the 70s my pulse can drop to the high 40s. The problem with this is that the hospital has a policy that they have to call a "code" for anyone on these parameters and my poor specialist is being bothered constantly (and I'm not getting any sleep).

My sensitivity to the copper is getting worse and for the first time ever I've got welts on my stomach and back as well as my arms and legs. One of the ones on my back has blistered. I don't know if I'm ready to find out if there is an alternative. Oh well, nothing I can do, sit back and watch the ride!

When do we pull the plug?
 

My treatment was stopped after three doses this time. I asked my doctor at what stage we reach the end point in treatment and he said that I have already pulled through an episode of being haemodynamically unstable due to an allergy to copper so it's just a case of keep on going until I get a lethal reaction.

I'm posting a photo of my current reaction. I have some on my back I can't photograph but have blistered. My blood tests have also started showing renal impairment with raised creatinine and lowered eGFR. My arms and legs have numerous welts like this some of which blister and some which don't but they all burn and itch. Once I have them they never go away completely. I get asked all the time why I have so many bruises. I guess I'm asking if anyone else thinks that I'm being silly thinking that my future treatment options are limited.

Chirley,

Silly is never a word I would use to describe you. You are a rock and persevered throughout when so many obstacle have been thrown at you. I admire you and how well you have handled your health problems with such grace.

Continue to trust your intuition...it has served you well in the past will so in the future.

Marlene

Gosh, I'm starting to feel like a whinger.

I've started getting bone pain (the throbbing type like when the bone marrow is regenerating but without the treatment), night sweats, loss of appetite, really tired, dizzy and slight nausea. My last blood test, taken after copper treatment showed pancytopenia (nothing major) but still not the response that would be expected after copper treatment.

This disease is just so damned annoying.

Chirley-

I am sorry you are feeling so terrible! Hopefully this will pass quickly and you will feel much better!
Take care, Jill

Copper
 

Hi Chirley,
Everybody in your situation would complain but still you are very brave as I have written before.

I get more symptoms too but they are nothing compared to yours. Two years ago I changed to an automatic car because I had neuropathy in my feet (MDS and/or Thalidomide). Now I had to let them put a “hand reglage” in my car because I can’t rely on my right foot. I still can walk without problems.

Since Dec 2013 I had pain in my neck. After three treatments June at my osteopath my neck is OK as long as I don’t carry anything heavy. Thank you members who gave me info about osteopaths!
Kind regards
Birgitta-A

Really pleased to hear the osteopath has been giving you some relief, Birgitta. I need to go myself at present as we've just moved into a house after 2+ years in our campervan, and there's lots of work to do, giving me a sore neck.

Chirley - I'm very sorry to hear that you're so unwell at present. I do hope that you are feeling much better very soon. Sending thoughts and prayers your way.

Well, I'm back in hospital for my next round of copper. We are trying 4mgs copper over 8 hours with steroid cover to see how I react if it's slowed down. Fingers crossed. I've been started on Digoxin to try to increase my blood pressure/heart compression. I've been on it about 6 days... So far, so good. BP about 90/50...better than the usual 75/40 or there abouts.

Even better news...my doctor has written in my chart that I can have wine with dinner. That's good on two fronts a) it will help me relax b) my liver enzymes are now completely normal