Hi Gosia, I'm pleased you are getting good care and hopefully you are having a temporary episode of serum sickness. While I was over the moon to think I was chatting with someone who knew what I was going through, I wouldn't wish it on my worse enemy.
I'm getting the most diabolical conflicting advice from my doctors. My neuro ordered Diazapam for spasticity and has never followed up. I haven't seen him since then and I have no appointments to see him. My rehab doctor changed the dose and times of the Diazapam and told me not to stop them, she even said to take extra doses when needed. This week, my haem doctor told me to start reducing the dose with the aim to be off them in a week or so, he thinks they will increase my risk of having a fall and a little spasticity/hypertonicity might be beneficial in helping me walk! Who do I believe?
I had almost daily IV Copper when I was an inpatient for three weeks and I've just finished another week of daily IV copper as an outpatient but my haem tells me my copper level isn't improving much. He said my urinary excretion must be increasing and he'll order another 24 hour excretion test later (when I've had a bit of a break from medical things). My CBC is almost normal still just low platelets (slight) and lymphs. The biochem is still abnormal. Potassium is low and decreasing each time, bicarbonate is low, eGFR is low, protein is low, liver enzymes still high. LDH is high. I can't remember the rest but there is an awful lot of red results on the results form.
I'm getting used to my new wheelchair but will still need to touch up some paintwork on the odd bit of furniture and doorways
. Not to mention grazed knuckles... The cat has learned to move out of the way and my dog knows to always keep an eye on me....I think she's learned to sleep with one eye open.
I've had a LOT of Hydrocortisone in the last month or so and I'm also on Fludrocortisone daily and finally my blood pressure is responding and I've had a systolic of up to 100 once this week. Mostly it's around 90 and I function very well at that level. I just get light headed when it goes down to the mid 80s or lower.
The new treatment centre is working well. I get my own room and a bed (not a chair) and wifi is available, there is my own ensuite, the staff are lovely and there are constant offers of tea/coffee/cakes/biscuits/ sandwiches etc. The lady who makes the daycare appointments (not the medical receptionists) is coming to my house today to buy my now unnecessary treadmill.
The other treatment centre was very posh/designer label "have a nice day" kind of place. This treatment centre the staff seem more real and sincere. The emphasis is on patient care and comfort rather than on what kind of skimpy uniform the nurses can wear and whether they have a hair out of place.
It's starting to get cool here, it's down to 24/26 degrees during the day and I feel like I need a light coat. Winter is coming.
My cat just decided to hop onto my wheelchair and thinks she's found a new bed, I've got news for her
Regards
Chirley