My doctor was away in Mexico and I saw a locum (fill-in) doctor who
diagnosed disc degeneration and sent a letter of referral for me to be seen
by an orthopedic specialist. Now, the wheels of the NHS (the UKÆs
universal health scheme) turn very slowly and I spent weeks going back and
forth to my doctorÆs office, seeing different locums, who all had their own
theories as to what was wrong with me. I had x-rays and blood tests
meantime, but nothing was evident and no appointment with the orthopedic
guy was forthcoming. It wasnÆt until the beginning of August, when walking
had become an impossibility, that I saw a locum who said my problem was
neurological and he referred me to the Neurology Dept. They, thank
goodness, were more swift than Orthopedics (who didnÆt contact me until
September!!) and an appointment was booked for me for August 13th. I was
at my worst by then and they admitted me to hospital that same day. They
were also most upset that I hadnÆt been referred to them before that time
because by then I was totally paralyzed from the waist down.
I spent two and a half hours in the MRI machine (boy, do I hate that
thing!) and they said it looked like TM, located at T11 and T12, and not a
tumor. Then I had the lumbar puncture (spinal tap) from which they took
six vials of fluid, then a chest x-ray and countless blood tests. I was
given three ômassiveö (their word not mine) doses of Cortisone by IV on
alternate days and took diminishing doses of more Cortisone orally for five
weeks after leaving the hospital. Physio-therapy was begun the first day I
was hospitalized and continued until the end of September.
I was in the hospital for eleven days and spent my time in bed or a
wheelchair. The docs saw improvements in my mobility after a couple of
days, even before the Cortisone treatment began and, once home, I went from
a wheelchair to a walking frame, then to a cane, all in the short space of
ten days. The head of the neurology team told me that TM normally comes on
in a matter of hours or days, it continues to get worse, peaks, has a
plateau, then begins to improve. He said he gives TM patients a time frame
of eighteen months to improve and after that no further progress is made.
He was puzzled because mine took so long to develop and because my bowels
and bladder were not adversely affected. I went back for a follow-up visit
in October and the neurologist was surprised that I could walk without any
aid. He told me the numbness would take a year or more to cease and that
the weird sensory feelings may never go away completely. They had found no
underlying cause so the official diagnosis was transverse myelitis of
unknown origin.
Right from the beginning of this problem IÆve taken Bach Flower Remedies,
vitamins, herbs, also been given Crystal Healing, Reiki and Distance
Healing. I believe in complementary medicine and I know that the things
listed above have greatly helped me. I also know that the Cortisone works
on the inflammation, but steroids are not something I relish taking. I
think the TM took so long to fully develop because the therapies, etc. were
making a difference. They werenÆt able to stop it, but they created a
æstalemateÆ for sometime. Since leaving the hospital, IÆve been receiving
cranial osteopathy which has also helped my recovery. IÆve not worked
since mid-July and am not sure that I will again, at least in my previous
job, as it involves me being on my feet a great deal. IÆm able to stay on
my feet for about an hour and a quarter now and this has increased from
less than five minutes over the past four months. I still canÆt sit down
on the floor or in a bathtub, but IÆm working on this. IÆm usually up two
or three times in the night in order to relieve the pain and stiffness in
my back and legs from lying still so long.
I hope this æhistoryÆ hasnÆt been too lengthy. I wanted to give as many
details as possible because our stories will maybe help the medical world
one day figure out what this condition is really all about. Finally, I
consider myself blessed, I know my condition could have been much worse
than it was.
Marion Webb-De Sisto (Maz)