Copper deficiency induced bone marrow failure

[Birgitta-A]

Hi Chirley,
Too bad with MRSA after all other negative issues! Do you know where you have the infection?
Kind regards
Birgitta-A

[Chirley]

Hi,

At first I was told I was colonized with MRSA from a nasal swab but now that I have developed fever I think they are suspecting an actual infection somewhere too.

Is it possible to have an infection without fever due to low neutrophils? It seems as soon as my neutrophils rose from 0.28 to 0.9 I started getting a feVer. I am assuming, I now have something to fight an infection with so that's why I'm only getting the fever now. Does that sound feasable?

Regards

[Lifeguard]

Chirley, I'm so sorry about your frightening turn . I hope they find out what type of infection you have. I'm glad you’re being well cared for and that you have your own room. I don't know if you can, but there is a MDS telephone forum on tonight hosted by the new Leukaemia Foundations MDS Coordinator. I posted a reply to you on the Talk Blood Cancer forum, but with the new site it seems my 2012 MDS posts have not been reposted. If I don't speak with you tonight, I'm sure we will catch up soon.

Rachael

[Birgitta-A]

Hi Chirley,
As far as I understand low neutrophils only means that we can't fight infections as well as if we have a neutrophil count of 1.5 or higher. Then we know that your neutrophils have been very effective and you have managed with very low counts.

Your neutrophils perhaps increased at once when you got the MRSA infection and tried to defeat the infection. Your body eventually reacted a little later and you got fever from the ordinary cytokines that give fever when we are infected.

Hope they will find an effective drug for the MRSA infection!
Kind regards
Birgitta-A

[Chirley]

Thanks for that Birgitta. I thought there might have been a reason why I didn't have much of a fever at the beginning.

The fever has gone again but they forgot to do a blood test on me yesterday so I don't know how my counts are.

I had the worst pain I have ever experienced last night. My legs started tightening up around 9 am yesterday and just got worse over the course of the day. My feet were pointing at odd angles. The physiotherapist couldn't get my knees to bend. Everything from my hips down just froze solid. That was painful but then I got neuropathic pain too and the pain got so bad I was screaming despite having Endone and parecetamol. My hematologist came in from home and ordered 10mgs morphine, tropisitron and two temazapam and I had 2 hours of relief before it started again. So I had the morphine repeated and it's 8hours later and the pain hasn't come back.

Im not claiming to have a high pain tolerance, I feel pain as much as anyone else but I'm not particularly whimpy either and the pain I had last night was so bad I would describe it as intolerable.

The nurses were beautiful, caring and helpful. My doctor was wonderful for coming in and I am very grateful for all the support I got last night.

I'm on the verge of tears right now with gratitude to the people looking after me.

Regards

[Chirley]

My hematologist came in a couple of hours ago and told me that my counts have crashed despite the copper treatments I've been having for the last week. He said he thinks the MDS has reared it's ugly head again.

He is going away for a week and another doctor will be looking after me but I need another BMB and possibly another lumbar puncture sometime soon.

Personally, I think they have done the test on someone else and not me. I was supposed to have had that blood test taken out of my port line at 4.30 this morning but I have no memory of it a all. Admittedly, I was heavily drugged, so maybe they did it and I didn't realize.

Regards

[Birgitta-A]

Hi Chirley,
How terrible with painful musclecramp and neuropathic pain! If they should return you now know that the combination of morphine and temazapam, that relaxes the muscles, is effective.

Too bad with the low counts - we can't expect that the counts should be OK when you have the MRSA infection and have had fever. I still don't think you have MDS but copper defiency your whole life. Hopefully the counts will increase when the infection is treated and you get copper.

You are a true hero!
Kind regards
Birgitta-A

[Birgitta-A]

Hi Chirley,
Low magnesium or potassium can cause muscle cramps.
Kind regards
Birgitta-A

[cathybee1]

Chirley, I'm praying for them to figure this out and for you to feel better quickly.

Hugs.

[Chirley]

I've just been discharged after three weeks in hospital and I feel lucky to have survived two different severe episodes.

I still haven't seen my haematologist since the time he told me that it looks like I do have MDS after all. I was just given a copy of some of my blood work and I saw that I had increased metas and myelos on my peripheral blood tests. Would I be right in assuming that these are blast cells?

I feel well enough in myself but I am now quite disabled. I am now wheelchair bound and will be receiving in home help. I'm very grateful to be home at all because my neurologist told me that I needed to be placed in a nursing home. At that stage I was in a permanent state of rigidity and couldn't move either my arms or legs. It was extremely painful, not to mention devastating to be so dependent and useless. I very much wanted to die while I was in that condition. Apparently my myelopathy has now extended to C3 from where it used to be at T2.

It took some time but my electrolyte imbalance, acid/base problem, kidney failure, liver failure, protein deficiency etc etc etc. have all improved if not totally resolved. My CBC doesn't look too bad either.

I still have problems maintaining my blood pressure and I take Fludrocortisone to help keep the systolic stay in the low 90s.

I have been having almost daily copper infusions which take 4hours each on average and I have been having hydrocortisone with each infusion so I think that's helped with the blood pressure too.

One good thing (I think) is that I have lost 3 kilograms in the last week alone. When I'm able, I'll try to stand on my scales and see how much weight I've lost all together.

This is my first day home, I've already had a two hour afternoon nap and I need to go to bed again. I think all the muscle relaxers I have to take to stop the spasms and rigidity are making me extremely tired but better tired than totally paralyzed

Regards

[Neil Cuadra]

Chirley,

I'm glad you are home, have help, and have reached a mostly stable state. Being unable to move must have been awful.

Be careful with the scale. This is not a good time to fall, after all that recovery progress!

[Birgitta-A]

Hi Chirley,
Very good that you are at home again!

Myelocytes are more mature than blast cells and metamyelocytes are more mature than myelocytes - both these types of WBCs can be seen in blood but it is not common.

Too bad with the painful cramps! Good that the muscle relaxers have effect!

Hope you will manage well at home though you have these new symptoms!
Kind regards
Birgitta-A

[cathybee1]

Chirley, what a terrible few weeks. It must be so wonderful to be back home, and know that you're able to move again. Please take it easy for a while.

Hugs.

[mausmish]

Welcome home!

[Marlene]

Glad you're home. I'm sure you'll recover faster at home than in the hospital.

[cathybee1]

Thinking about you, Chirley.

Hugs

[Chirley]

Hi, it turns out that when I opened my pack of discharge meds, there was no Fludrocortisone. I didn't know if iwas meant to continue and they forgot to give them or they had been ceased. I rang the hospital and didn't get any useful information. My hematologist was away and my GP was on leave so I just decided that if I didn't have any, I couldn't take them so no use worrying.

Over the course of the last week I have become so debilitated that I can't stand up to transfer from the bed to the chair etc, without feeling lightheaded, nauseous, breathless and sweaty. My hematologist came back today so I rang him and he immediately faxed a prescription for Fludrocortisone to my local pharmacy. Turns out I was supposed to stay on them to maintain my blood pressure. Maybe I'll start feeling better.

My Dad has a digital blood pressure machine, he took his BP standing up and it showed 90/68 then we tried mine while I was lying down. We tried three times but it just kept reading error. We assumed it was too low to register.

I have managed to weigh myself, I've lost 3.8 kilograms in the last week alone and although I can do with losing weight, I'm not trying to at the moment and that seems like a lot of weight to lose in a short time.

On the upside, I've managed to have my first haircut in 5 months, absolute bliss! My wheelchair ramps have been installed, my bathroom has been adapted and I'm learning to steer my wheelchair, although my cat is paranoid about her tail don't know why.

I had to hire a wheelchair because the one I bought on eBay didn't arrive.
When I contacted them, they said that the courier didn't pick it up and theyhadnt noticed and now it won't arrive until well after Easter. Needless to say I wasn't (aren't) happy.

I'm booked to go to daycare Tues through Fri next week and Mon the following week for copper infusions. At least this treatment centre is only 35 kilometers away and my commute should be ok. For the benefit of people who don't know Brisbane, the traffic congestion in this city is horrendous. It used to take me one and a quarter to one and a half hours to drive 32 kilometers to work and the same for the return journey. Peak hour starts from 6 in the morning and lasts until 9 to 9.30. Public transport like train and bus is amongst the most expensive in the world.

Afternoon nap time, so I'll say goodbye.

Regards

Chirley

[cathybee1]

I'm so glad you're back on your prescription now, you're getting set up for your wheelchair, and that Daycare commuting will be more manageable now! Your cat will adapt to your new vehicle, they are wonderful that way. Of course, they are Drama all the way, getting there.

Hugs!

[Chirley]

Hi,

I was reading back on my posts and realized that I didn't make it clear that my muscle problems are all neuro related.

The neurologist said I have generalized dystonia, hypertonicity and spasticity. He also said it was all my fault for refusing treatment, at this stage he doesn't know if it's permanent but he suspects it is. He is very blunt and ruthless not to mention pessimistic.

I've heard there is some kind of port that can be implanted into the spinal cord that can deliver drugs to ease spasticity and I'm going to raise this with him next time I see him. Botox can be injected into individual muscles but my problem is too generalized for that to be of any help.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
What a terrible neurologist you have! How can a doctor be blunt, ruthless and pessimistic when he has a patient with severe symptoms like you have? He should follow the old rule: to cure sometimes, to comfort always, to hurt the least, to harm never.

Good that you manage to continue to fight! Peaceful Easter!
Kind regards
Birgitta-A

[Gosia.P]

Hello Chirley,
I have been reading your blog and I'm so impressed how strong you are. You are incredible in your extremely 'adventurous' journey, looking forward to join you through this forum.
My name is Gosia (47) mother of 3 boys - Jake 26; and twins : Adam and Danny ( turning 11 on 4/17) *live in Indianapolis IN.*
It's been 6 years since my initial SAA (4/4/2006) diagnosis. Was treated with h ATG and cyclosporin, *6 months of post hATG transfusions and after all - great recover and in the remission until January of 2012. Received second hATG during 'leap week' 2/27 -3/2, now on cyclosporin 2x150 and tampering prednisone. My numbers are quite good, HhB around 8, and platelets 33, whites high due to high doze of prednisone - I was on 2x 30 for over a month.*
About 10 days past hATG I started developed quite intense pain in my extremities/ limps' joints kind of shooting up through my bones to higher joints - knees and elbows. We thought at this time that its the serum sickness - I has an episode of it about 2 weeks after my first hATG that resolved within 48-72 h without further problems. Vicodin was the med to take and it worked. *So this time when I started experiencing pain, we made sure I had plenty of it to help me out, but we did not expect what was creeping down on me. This time pains have not been letting go, is getting worst. I have constant tingling in me feet and palms, my wrists and fingers; feet and toes are kind of stiff and sensitive to temp. ( a lot of coldness in me feet); *this is *absolutely constant, and it even doesn't bother me. Worst part is when my " power thunderstorms and lightnings come" shooting pain initiates either in my wrists that spreads to my fingers and twists them in weird directions left lock in odd positions. Same happens with my ankles, with pain either soothing up to my knees or to my feet and doing the same to my toes.
So far I had 2 really bad episodes of the pain. First time I was trying to fight it with Vicodin for about 5 hour but gave up; it was way too much! *my husband had to take me to the ER - thank God we had a little rolling desk chair or he would have to carry my to the bathroom and the car. The pain was so bad that touching anything with my feet was making me scream!!!!
The doc at ER said is neuropathic pain syndrome! He immediately contacted (5am!!!) one call hematologist from my Doc's office and had a consult; same with my family doc. I'm still under great impression how fantastic he was!*
He treated me with morphine - and it HELPED.*
Prescribed Percocet which helps if I read the upcoming signs correctly *(trying to be toon into my body), and I guess I have been lucky enough since within the week of my ER visit I has one more bad episode, that I had to use morphine - I have it at home, my hematologist prescribed it..

Chirley, reading about you, and reading about this syndrome, I have to admit - it scares me!!! I know the outcome can be different it each case, but ...
I would love to hear from you, your story is giving me inspiration and strength and is helping me stay positive. Any tips, advise how you have been dealing with neuropathy would be appreciated, as I'm so new to it and I have not found many people who are AA and dealing with this on this forum.*
Tuesday is my hemo appointment and we are going to choose a Neuro doc that will be working closely with my hematologist.*

Thanks*
Gosia
**
**

[Chirley]

Hi Gosia,

Sorry I've taken so long to get back to you. It's 4.30 in the am here and unusually I can't sleep. Since I've been on the muscle relaxers I've tended to sleep 18 hrs a day.

I hope you get some answers from your neuro, mine is not very communicative. I've found out that I have myelopathy from my MRI reports, he didn't tell me. To this day I don't really know what it is. I found out that I have spasming from his registrar when I had an episode in front of her aand she said to my neuro that the spasming was obvious (first time I'd heard it called that). I had to ask three times why my body becomes rigid and stuck in odd positions before he replied "generalized dystonia" and then I had to Google it. I've complained about the pain to him on a number of occasions and the first time he just said that he wouldn't give me pain relief because it would effect my balance and I might have a fall. The next couple of times (over a period of 18months) he didn't bother answering.

When I was in pain in hospital the nurses tried to contact him for four days and he never answered his phone or pages. It was left to my hematologist to deal with my neuro issues. I'd love to change neuros or at least get a second opinion but when I raise the subject with my haem or GP they tell me the neuro is one of the best there is. I'd hate to think what the others must be
like!

My neuro has never ordered an MRI or any blood tests (except the original diagnostic blood test) or Lumbar Puncture or EMGs or any kind of investigation they have all been ordered by my haem. The neuro does do a pretty thorough physical exam, he seems to love poking me with needles to see if I can feel it.

I'm not usually a person who volunteers for invasive testing but it's been 15 months since I've had a BMB and 18 months since I've had a LP (it was quite abnormal) and I'm thinking it's time I had some follow up testing just for comparison.

If it's of any comfort I think there's a difference between neuropathy and myelopathy. I have a combination of the two. Neuropathy seems to be more concerned with peripheral nerves and myelopathy with the central nerves/spinal cord or brain ( don't quote me). I have hyper intense white matter lesions in my brain as well as lesions in my spinal cord so I don't really know what bits cause what effect (once again, no communication).

Some days are better than others and I can't seem to get a grip on cause and effect yet. I did think at one stage that the more I tried to do the worse I felt later (body seizing up) but I have had a couple of times now when I've simply woken up and nothing wanted to work, so I don't know why that would happen.

I'm on NO pain relief. Sometimes I think I can't take any more but I live through it and it eases off eventually. But, next time I see my GP I'm going to ask for pain killers because I can't see any benefit in "being brave". The neuro can't use the argument that I'll fall over, any more because I now use a wheel chair.

Do you have blood pressure problems? My BP today was 88/48 lying down and taking tablets to increase it. I also have lots of salt on my food and have started eating a bag of potato crisps every day (only for the salt, of course). I'm also starting to have a problem with keeping my potassium up in the normal range but I think that maybe the steroid is keeping the salt (above normal on blood tests) at the expense of the potassium but that's just my
theory.

I have heard them talking about neuropathy in the treatment centre I go to and apparently it's a common side effect of chemotherapy. I don't know if it goes away when the chemo is stopped or if it improves or even goes away completely. Mine is caused by something completely different and I'm told that it's permanent and likely progressive, but I just have to wait and see.

Best of luck to you and. ,yes, it's nice to not feel so alone. I don't really feel as if I belong to this forum but it's the closest thing I can find that relates to my condition.

Hugs

Chirley

[Marlene]

Gosia,


What other drugs are you on? Any anti-biotics or anti-fungals or anti-virals?

Many things can cause neuropathy. Toxicity from drugs, insufficient nutrients, diabetes, candida, viral/bacterial infections, auto-immune attack, structural/spinal issues and more.

Marlene

[Gosia.P]

Sorry I didn't reply right away. Wanted make sure I have all the info.
Tuesday was my hemo appointment. My numbers are looking good. HB was still high 10. I was transfused 2 weeks ago. Looks likemplatelets went up a bit, which would be a good sign.
As to my pain - no changes. Still feel crappy and immobile. Haven't been driving in a month!
Discussed with my hemo doc Neuro consult, as to the diagnosis given to me in the ER - neuropathic pain syndrome. He doesn't think that the problems are Neuro but extended serum sickness, but made sure I'll be seen by a neurologist. It happened today. Poor guy was quite clueless as it comes to aplastic anemia and the treatment, we ( my husband goes to all of my appointments) had to explained a lot to him. But he listen very carefully and examined me. Based on the exam he does not see any Neuro changes !!!!!! *I'm so happy to hear that!!!! He relates my pain and problem to serum sickness and prednisone. Will be going back on 4/30 for a Neuro test EMG and a follow up visit with him. He wants to make sure that he is not missing anything. I have to say, that I like his approach.

Marlene,
You asked what drugs I'm taking, here is the list: prednisone 2x 15mg was on 2x30 for 5 weeks and we are tapering it down now; cyclosporin 2x 150 mg, Lasix 1x20 mg for edema and synthroid for my thyroid, had Graves Disease and my thyroid was ablated in 2003, and Paxil 1x20mg to remain sane in this whole mess :-)

I do hope that this long lasting serum sickness will easy off soon, I can handle the pain quite well now as I'm listening to my body and know when to take meds to easy it off, yet my biggest challenge is lack of decent mobility.*Also swelling - my face, neck, shoulders... Bothers me a lot. I don't see how much the Lasix is helping...
Any ideas...

Charlie take care, hope you doing well

Gosia

[Marlene]

Hi Gosia,

Good that they don't think you have neuropathy. Your edema can contribute to the overall pain. The swelling can compress nerves causing some problems. Hopefully you'll get off the prednisone soon and the swelling will come down. John never got a really good response when he used lasix orally. The IV lasix worked much better for him.

Even though they have ruled out neuropathy, keep in mind that Paxil can cause it in some. So if things don't clear up, you may want to consider another med.

BTW.....John ended up with peripheral neuropathy....I guess you would call it collateral damage from treatment. Totally unexpected.