Copper treatment

[Chirley]

I've just been admitted and seen my doctor. I asked for a referral to see a Psych while I'm here. He said "yeah, sure, no problems" then he listened to my chest etc. he thought for a while and said why did I want to see a Psych. I just said I didn't want to discuss it with him and that was what the Psych is for.

To his credit he just laughed and said "fair enough". So the Psych is booked to see me tomorrow morning.

I'm in a room by myself which is nice but the old lady next door is demented and hasn't stopped screaming since I got here. The Nurse Manager keeps popping her head in and apologising but it really doesn't bother me. Reminds me of my working days when I would go to the secure medical wards for dementia patients. The things she's screaming out are rather funny. She has "runny stuff coming out of her bum". Oh, I so hope not.....poor nurses!

Talk about my weight piling on. I have "hospital pyjamas", you know, the good ones you don't wear at home! Well, I put them on when I got here and they just barely fit. They were ok last time. I'll probably need to ask for a hospital gown when they start the steroids and fluids and I blow up like a balloon.

Uh oh, there's more runny stuff again, but this time it's coming from her ears???......so glad I'm only a patient and not the nurse.

[Sally C]

Hi Chirley,
I wish there was something I could do to help you. You always manage to come up with a sense of humor in spite of how you feel or your situation. You have been a great help to so many on the forums!
I hope things improve for you - both mentally and physically. You have been through way too much.
I'm so glad your Dad is such a great support. And I hope you know how much you are appreciated on the forums.
Take good care - I wish you the best.
Sally

[Lbrown]

Chirley - it's not you. I don't see how it is even ethical for doctors to refuse treatment on someone who wants and needs it.

Good luck with the psych.

Deb

[Birgitta-A]

Chirley,
Perhaps your GP doesn't know what every psychiatrist knows - all antidepressants will decrease chronic pains:
http://www.mayoclinic.com/health/pai...ations/PN00044

The problem with antidepressants is that we never know what patient will respond to a special drug - the same as with MDS. Have you tried antidepressants before - if so you perhaps already know which drug is the best for you.

Then most drugs start with adverse effects like anxiety and sleeping problems so you have to start with a low dose combined with Valium (as you take for spasticity) or a similar drug. After 3 weeks many patients feel better in the evenings but some patients have to try a longer time before it is time to try another drug.
Kind regards
Birgitta-A

[Chirley]

Thanks everyone. I've been awake since before 3am (hives are burning).

Birgitta, I've never had any type of psych drug. Just the Valium for the spasticity and I'm a bit reluctant to take them. I've not even been able to drink alcohol flor about a year or so. My liver isn't great but really, I just don't like the taste any more.

I'm looking forward to seeing the psychiatrist. I considered asking to see a psychologist but I think my problem is more a medical problem than anxiety/behavioural problem

One thing I have noticed that when my copper levels drop, I get depressed. I'm pretty sure there is a physiological connection.

It's going to be good to talk honestly to someone who has no vested interest in my life and won't make judgements. I'm wanting someone who will help me see things clearer and perhaps even tell me when I'm just plain and simply wrong. I need to know if I'm deluded for thinking I can improve. I may not like the answer but it's better than doubting and second guessing every thought I have.

Just had my obs taken. Everything good. Just a bit wheezy and oxygen a little low but that's not surprising. Got to love a low metabolic rate that gives me a body temperature of 34.8 while feeling hot, perspiring all over the place and with a fan on me!

Only an hour and I can have a shower. I don't like to have one before 6 in case it disturbs people. The demented lady next door has finally stopped screaming. I think the nurses would be very unhappy if I woke her up.

[sbk007]

Hi Chirly, hope you are feeling better. Sorry you have to go through all this. I think anyone would be overwhelmed and depressed. When we feel like crap we tend to get depressed but when we are felling well the depression is easier to handle.
The Demented lady is going to be screaming once she wakes up.
Keep in mind she cant help it. Its part of her disease. I
Hope the Docs get you going again, you seem to come bouncing back so I expect it'll be the same this time around.
Feel better! _ Steve

[Chirley]

I only have one question. Why didn't I see a psychiatrist before now? He was delightful. He just did a preliminary fact gathering session and has already made me feel better about myself than I have felt in a couple of years. I even have a tentative diagnosis of clinical depression caused by my neuro condition involving the chemicals in the brain.

He assures me that I'm not in denial about my condition and that I should never have been told that I have no hope for physical improvement because my condition is so rare that those kind of assumptions are very tenuous.

He's coming back tomorrow to do a proper session and start anti depressants. He wants me to have the tablets while I'm in hospital so I can be monitored.

Thank you everyone for supporting me. I suspected I was losing my mind and was doubting every thought I had. I feel more confidant now that my thinking isn't deranged. In fact he assured me that my thought processes were perfectly normal in the circumstances.

Birgitta, this psych is late middle aged, very overweight, dressed sloppy casual and very informal. He's very easy to relate to. I'm thinking your career must have been very rewarding. The mind is as important (maybe more important) than the body.

[Honeybun]

Chirley

Your not deranged, as I said before we probably all go through this at some stage. The last few days of back to back to back appoints with hospitals and doctors for my dvt paid a toll on me. You go to one doc he says one thing you go to another and he says something else you don't know what to believe and sometimes you do think you are going mad. Some make out it is serious some treat it as nothing.

I went to my orthopaedic surgeon for my 3 month follow up and he didn't want to talk to me about my knee because of my dvt and was telling me to go and get an xray for my chest because I was having breathing problems,
( he still charged me for the consult though). As many times I told him I tried to make an appointment that day but I already had so many appointments to fit it in, and still had to go for my injection in one hour which was at 4.45, and everything shuts after 5pm on a Friday. He still didn't let up when I was at reception paying, that I just had a mini breakdown, tears welled up and I just walked out, leaving poor Bjay at the counter with the aftermath and the bill. I was trying to make him understand that people are not just going to move appointments for me! Anyway long story short they rung ahead and got me in at the hospital I was at, and probably just as well as they found a large clot in both sides of my lungs. The radiologists were very concerned and wanted to get an ambulance to transport me to another hospital, but we got their on our own. They did ring ahead and tell them the emergency and their concern, but when I got their I was told their was nothing they could do, and to go home and rest. Here we go again. Frustrating!!!

On another note, the clot probably explains my previous posts about breathlessness etc, it wasn't my haemoglobin, or the thought that I had whooping cough, I probably had this clot for over a month now. It was just as well my leg swelled up.

Chirley, Docs do not see all that goes on in our lives, from the appointments, to work, to family to everything else we juggle. Sometimes we just need someone to talk to as well, that understand.

Get well soon Chirley, send me a PM and let me know how you are doing. I am their if you want to vent.

Honey

[Birgitta-A]

Hi Chirley,
Good that you liked the psychiatrist ! Hope you will continue to feel better! He is right when says that nobody knows anything about your future - some doctors think they are God.

I have stopped reading abstracts about prognosis in MDS because I have lived much longer than expected. My doctor is very optimistic and has never told me anything about my prognosis. He answers my questions and we discuss my treatment. The problem is that I have to look after my neutrophils myself because he always thinks they will start to increase while I prefer to take Zarzio (Neupogen) twice a week instead of once a week if I think they are too low.
Kind regards
Birgitta-A

[Chirley]

Isn't it interesting that a lot of the stresses of chronic illness is caused not so much by the illness but by dealing with the medical profession?

When I told the psychiatrist the my Physician asked me if it was alright for me to be admitted for treatment on Friday that I got off the phone and cried because it's the first time since I've been dealing with this illness that some one has asked me permission instead of ordering me.

He said that most medical people don't understand the lack of control we feel as chronically ill people and how important it is for us to feel control over our own lives.

(The psychiatrist really does ask the questions like in the movies...how was your childhood, how is your relationship with your parents). I thought he knew that i was a pretty conservative person when he said "I don't need to ask if you've ever taken illicit drugs, I already know the answer". Yep, it's obvious, no rebellions for me, quiet, conservative, conformist and boring.

I don't know the name of the tablet I'm going to start taking but he is coming back this afternoon and he'll order it then.

I had a pretty bad night last night I had a severe reaction to the copper despite three lots of IV Hydrocortisone and oral Claratyne. Rash/itch/burning, stomach cramps/diarrhea, wheezing/cough and low BP and oxygen Sats. I'm glad the hospital has run out of the Copper Sulphate and today will be a rest day until they can get some more from Baxter tomorrow. I'll be here an extra day but that's ok, I'll just chill out and enjoy the room service.

Ill PM you Honey. Sounds like you've had the run around too. I used to think our health system was world class but realisation has dawned that it has started going down the gurgler.

[Chirley]

I started Doxepin on Sunday night. I slept like a log. Woke feeling as if I had been to a wild noisy party and was hungover but that rapidly improved.

I'm going home today. Not before time!

Admitted Friday and had copper late evening and into the night. Copper on Saturday finished later evening. Sunday they ran out of copper. Rest day. Monday waiting....waiting.....waiting. Copper finally turned up at 9 pm and ran until 1.30 am. However....when the nurse came to disconnect the copper when the pump alarmed it was found that all the copper had leaked onto the flood instead of into me! I wasn't aware because I slept through it all from the new tablet.

So, I'm having copper as i type but it's not due to finish until 2.30 and the ambulance is picking me up to take me home at 1pm. I'm not going to get the full dose. I will have spent 5 days in hospital for two and a half doses of copper.

The lady next door is still screaming and when I went to have a shower this morning I discovered the hospital hasn't got any hot water. The nurses aren't very happy about that. All those elderly people that they have to try to bathe and heating water in the microwave.

My doctor asked me if I want to come back next week for more copper to make up for this weeks fiasco. I won't repeat my response.

On a positive note, I'm feeling pretty good.

[Cheryl C]

I love your cheerful spirit in spite of the vicissitudes of your condition and your treatment, Chirley. Hang in there girl!

[Chirley]

I got a really big fright this morning. When I woke up I couldn't move my arms or legs. Everything was in spasm including my chest, back and abdo muscles. I didn't know what to do. In fact I couldn't do anything except lie there and panic. I even had trouble breathing because my chest muscles were so tight.

After a long time (probably wasn't, but certainly felt like it), my muscles stopped spasming and I got up and immediately took a rather large dose of Valium to stop the spasms returning.

I rang my local pharmacy and asked about the Doxepin. At first they said it wouldn't have caused the problem but then the pharmacist found an article which stated that Doxepin can increase the severity of existing movement disorders. I was advised to call my physician and when I spoke to him he told me not to take the Doxepin again and to take some Valium (didn't tell him I already did).

So, no Doxepin for me. (Seinfeld....no soup for you).

I have an old work acquaintance (boasts he taught me everything I know, he's so modest) who is now a Professor of Neurology specialising in DBS and movement disorders. I tried to make an appointment to see him but the next available appointment is almost a year away.

I feel very blessed that what I experienced this morning turned out to be temporary. I'm very frightened of being stuck in a body that I can't control and not be able to communicate. Sometimes I wish I liked alcohol.

[Neil Cuadra]

Chirley,

You really scared me with that story. Just hearing that you woke up unable to move made me think of locked-in syndrome. I know these were spasms, not a brain injury, so it's nothing like that, but it sounds just as scary.

I hope your "modest acquaintance" can shed light on it.

[Chirley]

Actually Neil, I've had this before in hospital and they called the ICU people to me.

It's just like that locked in syndrome that you linked to. I didn't try to talk this morning because I was by myself but in hospital I couldn't talk or even focus my eyes properly. They kept saying I was "non verbal".

I was told it was a brain lesion caused by cooper deficiency but my neuro care has been so poor as to be non existent and I've never had any investigations done to find the exact cause.

Part of the reason I've been feeling so down is that I'm made to feel that my condition isn't fixable so they may as well not do anything. I feel completely expendable. The only doctor who wants to help is the physician and he is working at the limits of his knowledge. The psychiatrist I saw said that after reading my charts he wouldn't blame me for being angry about my medical care because in his opinion it has been very poor. The thing is, I'm not angry just tired and depressed.

I have my fingers crossed that I don't have another episode of being stuck with my legs and arms in contracted positions. It was very frightening and painful.

If it happens again I think I'll have to move to an assisted care facility which means losing my beloved pets.

I just wish I could get some decent neurology input.

[Birgitta-A]

Hi Chirley,
How terrible with the muscle spasm! My late husband always said that the doctors are "chasing the evil around the body". He hated all drugs due to the adverse effects.
Kind regards
Birgitta-A

[Chirley]

I have a chest infection, and I'm happy.

My white cells are high enough for it not to be a concern. (I hope)

This is the first infection test I have had for a long time and I'm okay!

[Chirley]

I saw the GP today (well it's 4.26am, so really yesterday). My Hb is 96! (fingerprick) It was higher before my hospitalisation and copper infusions. I'm a bit confused about what's going on.

Maybe this viral infection has lowered my counts. If my bone marrow dysfunction is caused by copper deficiency why would my counts drop after being given copper even if I have an infection?

Sometimes it's all too much to understand.

I'll just have to go with the flow and wait for my the official blood results with the WCC etc. noticed he added an ESR this time. Maybe he thinks the infection is a problem....who knows?

I'm so tired and have lost 3 kgs this week. I'm glad to be losing weight but I'm not trying and that's a bit concerning.

[Birgitta-A]

Hi Chirley,
You know I think all kinds of infections can decrease counts - remember that your bone marrow "is weak" after all these years with hardly any copper at all.

Hope you manage to fight the chest infection!
Kind regards
Birgitta-A

[Marlene]

I too feel that fevers/illness can burn through red cells. Finger pricks are not as accurate so hopefully you'll get your cbc result soon.

[curlygirl]

When my son was burning through red blood cells during his virus in the hospital I mentioned it and his doctor said that it actually happens to most healthy people, too. Just that when you go from a HgB of 14 to 11 and get better in a week you don't feel it but that when you go from 8 to 6 overnight you do. Hopefully you'll feel better soon and your counts will improve!

[Chirley]

Thanks everyone.

The thing is my cold/chest infection is completely gone. I came through it with flying colours. Just feeling tired.

I think I'm just letting this whole thing get to me. Just when you think you are on the right track and treatment is going along nicely and the bone marrow is behaving.....this happens. It's probably just a tiny little glitch and in all probability the fingerprick test was totally wrong but it does make you do a double take.

There will always be that little niggling doubt waiting to come to the surface when the tiniest thing out of the ordinary happens.

Come to think of it.....in the last couple of months, I've had three bouts of gastro, a urinary tract infection, a chest infection, a cold, a fever of unknown origin and a throat infection. All of which I've recovered from pretty fast and only needed antibiotics for the urinary tract infection and fever of unknown origin.

No wonder I'm a bit tired!

[Chirley]

I just got the phone call from my GP. Yes, still anaemic BUT my WCC is in normal range and so are my neutrophils! Lymphocytes low again but they've been low all my life except the one scary glitch a few weeks ago when they were high.

I realise the WCC is probably just responding to the cold/chest infection (which has come back) but that is a great sign that my bone marrow can respond normally when it needs to.

[Cheryl C]

Yes - no wonder you are feeling tired! You've been through the mill lately haven't you. It must be amazing to see a normal result for your white cells Chirley. That's great news - especially if you are having steroids. I understood steroids drop the white cell count, or is that wrong? When I got very ill with bacterial bronchitis over in Italy in 2011 the doctor there warned me that the steroid injection and follow up tablets she prescribed would drop my white cells further.

Next week I'll be seeing the specialist down here in Tassie where I am at present and will find out if my copper levels are normal, so that will be interesting.

[Chirley]

I don't really know what steroids do to white cells long term. I know that they raise the neutrophils in the short term because they are released early from the bone marrow and vascular walls in response. It's called margination.

I'm not on steroids all the time any more just when I'm in hospital so the sensitivity to copper is reduced.

I've done well with this cold and chest infection. One of my friends has it and she's on antibiotics and has been off work for almost two weeks. My mother has it and is on antibiotics (and whining and moaning). The next door neighbour has it and he's been home all last week off work. The GPs secretary said that it's rampant and there are a lot of cases of "man flu" coming through their doors.

Where in Tasmania are you? I did a trip around a couple of years ago. Lovely place but those mountain roads are bit tricky for my liking. Seeing all those crosses showing where people have died in crashes or going over the edge.....not for me! I'm not a trusting person and being driven by someone else who seemed a little reckless at times was just plain horrifying. I considered buying a holiday home in Triabunna (not so mountainous) but decided I didn't want to do the flight all the time given my mobility problems.