kaka's story

[johnny alpha]

Here is my belated story. Forgive my poor English please ;p

The problem started from losing appetite in early Jan this year, also
experienced two days' aching body, later on persisting vomiting, I
couldn't eat anything, was admitted to hospital in Canberra, stayed
there for five days, but no diagnosis was made. Went home with that
awful vomiting symptom. I thought maybe it was the food that makes me
sick(I am Chinese), so I moved to Sydney to live with my uncle's
family, more and more problems came to bother me: dry coughing, low
blood pressure,itchy skin, tremor , etc. Had a Gastroscopy suggested
by GP, only found mild gastritis. It was urine retention that brought
me back to hospital again on 2nd March. The next day I had a MRI,
together with other test results, they diagnosed me with Lupus. So I
had three Chemo therapies(once a week over three weeks, and very small
dosage each time). As my doctor was still suspicious at the Lupus
diagnosis, because I didn't show the symptom, so my blood sample was
sent to a lab of Queensland Health in 18th March (I have posted the
detail of this lab in my previous post). The result came back positive
for Devic's disease (the NMO Ig Ab was raised at 1:160). Therefore my
diagnosis was revised to neuromyelitis optica, the chemo
therapy(cyclophosphamide) was ceased, and Imuran was started.

I think prednisolone was started immediately after Lupus was
suspected, at that time I was taking too many tablets plus I am not
familiar with English in hospital...so I wasn't aware that I was
taking prednisolone, possibly more than 37.5mg per day. During my stay
in hospital, well, I was experiencing bowel and bladder problem,
mobility...I was able to walk, but walking with the urine bag was very
discouraging for me Released from hospital on 28th March, I learned
how to self cath, but fortunately I don't need it any more. From April
to May, I still have problem with coordination and need aids for bowel
movement, also spasms bothered me a bit. My parents took me back to
China, as they want to seek alternative treatment such as Chinese
medicine.

I saw a Chinese medicine doctor here in Beijing, he thought I was on
wheel chair. But I wasn't...Started his herbal medicine since May and
continue to take the combination of Pred and Imuran. Currently I am on
75mg Imuran and 5mg Predinisolone daily, was taking 100mg Imuran for a
while, but since my WBC kept dropping, my Australian doctor suggested
me to take 75mg per day.

At this moment, other than the pins and needles feeling on my right
hand, I don't have severe symptoms. The vision attack never happened
to me, not sure whether this is luck or it might happen in the future.
I did a visual evoke test in April, nothing was wrong with it. I can't
detail the herbal medicine I am on here, it is too complicated, also
the doctor here don't separate Devic's with MS. Well, since I tapered
down Pred to 5mg per day on 10th Sep, I started to lose appetite...not
able to eat...and this morning I started to vomit...wasn't a good
sign...as I was sick like this when I started to feel ill in Jan. Is
this a relapse? I have no idea...think maybe it is the reaction from
tapering down pred...

Ok, hope my story will be helpful for the group, I can't find anything
like this in China, feeling like I am the only Devic's patient in
Beijing : (




copied from us google group
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one cannot discover new lands without first having thee courage to leave thee shore...we can go on....together!