Lurking - no longer

Jan Burgess (datapro(AT)bconnex.net)
Tue, 12 Jan 1999 04:06:35 -0500

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Hello to all:
 
Our nephew, Craig Woods was diagnosed as having TM.   He is in Credit Valley Hospital in Etobicoke Ontario.  The day after his 36th birthday (Nov 22, 1998) with no prior viral infection, he noticed strange tingling in elbows & fingers which he tried to shrug off.  Then sudden crushing pain in his upper back & down his arms - he was sure he was having a heart attack.  His wife, Lynn drove him the few blocks to the hospital and left him at emergency while she parked the car.  As he entered the hospital, his legs grew heavy and would not track properly.  He collapsed across the admitting desk, and he was soon admitted.  An emergency MRI within a few days gave rise to a diagnosis of TM and "massive doses of steroids were given. There was noted improvement.

He had a setback on Saturday Nov 28th.  He was taken off the medication on Friday
which caused him to regress.  He was in quite a bit of pain and felt very
weak  Next day, however, he did seem to be some improved and moving
forward again.  Monday morning, though, about 10 a.m. he was in considerable pain
again and  asked to see his neurologist. 

My husband & I were wondering if this was G.Barre syndrome but by Monday afternoon,
Nov 30th we got this from his Mom:
"I was called to the hospital this afternoon.  Craig worsened, had violent
pain shooting down both arms then to quote him "everything shut down".  He
now cannot move his upper body, arms, hands, etc. virtually numb from the
neck down.  He has been put on another drip - very heavy dose of something
- sorry this is so vague.  Anyway Lynn is staying the night with him as he
cannot even ring for a nurse, feed himself or even scratch his nose.  It is
all very scarey but still we know the Lord is in control of it all.  We at
least now have been told it is Militis - don't know how to spell this but
you will know what I mean..........................."

December 3rd: "Yesterdays news was not too encouraging - he had been able to wiggle his
toes but  yesterday he could not move his right leg at all.  The medication
was finished and still no movement in his hands.  However, this morning
there is a little improvement so we are encouraged.  He can move his right
leg a little and he has slight movement in his index finger on his right
hand. 
 
I still have not been able to find out if they call it transverse or not. (later confirmed)
They were going to put him on pills for two weeks - same drug that he had
been getting by drip - but the dr. changed his mind and has put him on a
drip again but of the medication that he was on last week as his body
seemed to respond to that better than it did to the potent one he was on
this week.  Of course his condition was not as severe last week."

December 9th: "Craig is feeling a little stronger each day I think.  Yesterday had a
little feeling in his back and physio had him stand with a tall walker that
has padding under the armpits and he was able to move somehow a few steps
with someone each side of him.  Also he has a little more movement in that
right hand and is able to use it a little but the left hand is still asleep
and no tricep in that arm.  The downside is that he has a bladder
infection, his blood sugar is high and he is on insulin, and last night I
didn't like the sound of his cough so am hoping the lungs are still clear.
 
One of the doctors was looking through the info you ran off the internet
and found it very interesting, particularly the case studies.  Personally I
found it a little frightening."

December 15th:"You likely heard on Sunday that Craig had regressed once again and has lost
all movement in his right leg, right hand and back.  The neurologist was in
yesterday (several times, in fact) and says this is not normal for TM.
Craig has now been scheduled to have an MRI at Toronto Western Hospital
tomorrow (Wednesday) at 12:30.  Please pray for wisdom for the doctors
reading the MRI.  They are afraid to do a spinal tap until they see another
MRI as it is dangerous to do a lumbar puncture when there is inflammation
as it might draw the inflammation down the spinal cord.  Craig has an upper
respiratory infection and quite a cough so another specific for prayer is
that he will not cough or even have the urge to cough during the MRI as if
he moves during the procedure it ruins it."
Craig is going to Toronto Western for the MRI, taking his
original MRI with him and the neurologists at Toronto Western are going to
read the MRI.  He is going as an outpatient and expected to return to
Credit Valley "

December 18th: Thanks for this information.  I haven't sent you any news because I am so
discouraged and really don't understand what is going on.  Craig is back at
Credit Valley.  The MRI showed that the inflammation has increased since
the previous MRI  and so they have decided to wean him off the steroids and
give him something that I do not know the name of but, if I understand
correctly, it is like an immune booster.  He will be on this for five days
and then we will see.    I do trust the inflammation will not go further up
and down the spinal cord now he is off the steroids.  Actually I think they
are all baffled as this is not the normal behavior for TM.  The MRI showed
demyelination of the spinal cord - now from about C2 to T ?something so it has certainly spread since the original MRI. (C7)  I hope to go in to see him in about an hour"
 
 
The "immune booster" mentioned is of course Immuno Gamma Globulin. We learned
January 9, 1999 that they were going to try another IGG treatment.  They are
now talking about rehabilitation at Lyndhurst Lodge, Toronto for a YEAR! Craig & Lynn
have two young children Jonathan (born March '92) and Laura (born April '94).
Craig worked as head of the audio-visual division of his Dad's company. His absence is an added strain to their workload as well as the worry & the hospital visits. Lynn is an RN
- but not at the local hospital where Craig is.

Significant Health History:
Craig had meningitis as a youngster, and was diagnosed as having Sherman's disease at about age 12.  Makes one wonder????

I have been monitoring your group discussions, sure wish Craig and/or his wife Lynn had
access to the group.  My only E Mail contact is his mother, who is ill herself with overwork & anxiety.  I live some 55 miles from where Craig is hospitalized and he cannot pick up a phone.  If any of you started out with a similar history and progressed significantly
AFTER medical interventions stopped your story could be encouraging or if you just want to send him the encouraging news that you are pulling for him or praying for him (even better)
Please write him care of myself:
 
datapro(AT)bconnex.net
 
I will put all the messages together for him & take them to Toronto next time I go.
 
I am an ex-RN and my husband Gordon a retired Dr. of Chiropractic.