To fellow myelitis fighters,
I stumbled upon your website and signed up for email list immediately.
Does anyone know of someone with transverse myelitis in Fiji and a good
neurolosist? I have had t/m since 5 Oct last year, just a few weeks
before I turned 34. I relocated from Christchurch in New Zealand to Fiji
in June as I got a new job. The sun did some good as area of numbness
was reduced within a few days of arrival in Fiji. But the conditions
have been stagnant. But I feel that I need to consult a local GP with
the view to seek further treatment in Australia or in NZ.
At the onset I was not sure what it was and hope that it would go away.
I waited for a month and decided it was time to seek medical treatment.
Then I went through MRI scan in Dec 2010 in Christchurch, and lumbar
puncture in April an Auckland this year. (The February earthquake in
Christchurch caused a havoc in the local medical system.) The results
confirmed lesions in my spine and slight abnormality in my white blood
cell. The neurologists thought of my conditions as moderate and did not
think that it would deteriorate. They suggested 'wait and see' as the
first option as diagnosis was too late for steroid intervention, and
hoping for natural recovery. On one hand I am pleased that I did not end
up taking medications and risk side effects. But I wonder if my doctors
simply gave up.
My mobility is compromised: weakness in legs, but not as bad as other
people with t/m. I can ride my bike and swim. Legs twitch spontaneously,
especially when I relax. Walking is possible but with robot-like
swagger, but difficult and slow. Balance is difficult. Bladder and bowel
dysfunctions add to my angst. My hands seize up on contact with heat.
Sleep is rather disrupted, although this has been a problem since the
first earthquake in Christchurch, September last year. I used to be very
active: cycling, swimming, gym, running, etc. Weight gain is a concern.
One thing that worries me is what to do with my 'career aspirations' in
the ivory tower - a very competitive and ruthless field. It can be
stressful and may aggrevate my conditions. Should I change tack? (I am
35 y/o, male, single, no family support) When applying for new jobs
should I declare myself as having disabilities? My previous GP in New
Zealand did not think that my conditions are not too severe to carry out
duties as a lecturer (my job) and need not make such declaration. At
times I feel as if I need to 'come out', but I feel as if I am making
myself a less attractive job candidate.
I contacted reps of the t/m support group in New Zealand and Australia
and asked for some names in Fiji. But I thought it best to cast my net
wider.
Anyways, I would appreciate your responses.
Ryota Nishino
[email protected]
