Mar.22,1998
Dear Members ,
We are writing to you out of desperation to see if you might be able to
help us or at the least give us some hints on where to go next.
My brother-in- law has been having noticable problems for over a year
and we are no closer to knowing what the problem is now than we were
when it started .His condition continues to get worse and we seem to be
at a dead end .Here is our story.
JAN1996
Wayne loves music and loves to dance .He noticed a problem with rhythm
when dancing.His left side did not seem to want to move the way he
wanted it to .This did not happen all the time .
He was being treated for a cardiac problem and was put on medication for
fibrilation at that time by his internist .(lanoxin and biquin dureles
and was later put on warfarin)
The internist also refered him to Halifax to see a cardiologist who he
saw in Dec 1996. On the basis of his MRI the cardiologist did not feel
he needed a cardiac catheterization .He was told he had pericarditis and
could continue on as before.He was very active.He played
hockey,bowled,danced,and worked fulltime at an office job.
He was taken off the warfarin before going to Halifax in anticipation of
the cadiac catheterization and resumed taking it when he came back home.
FEB 1997
Wayne noticed a slight stutter and this progressed quickly.It bacame
more frequent.Wayne consulted with his family doctor at that time who
felt it was from stress due to his heart problems.He did finally send
him back to the internist and by then Wayne was also having problems
with his balance at times.
Family and friends had long before noticed a change in his personality
and manner.He had been a very out going ambitious person who was always
the life of the party and the leader in everthing he undertook .He
became an observer ,spoke little and as time progressed took on less and
less unless his wife would go with him.
Wayne was offered a early retirement package due to the downsizing of
the coal industry and he took it .This was not for medical reasons.
Wayne was referred to a speach therapist and an throat specialist for
his speech problem.They could find no physical reason for his speech
difficulty.The speech therapist gave him some methods to help him
correct the stuttering.
DEC1997
Wayne was referred to Halifax and saw a Cardiologist ,a Rhumatologist ,
a Respirologist nad a Neurologist.
The neurologist felt that there was a neurological degenerative disorder
at this time and felt an MRI would give a better picture and more
information.
FEB 1997
MRI was done in Halifax and the results were good.Nothing found.The
neurologist told them when questioned that it is not MS ,stroke
,anneurysm,tumor or any major problem of that sort.It was some
neurological degenerative problem.
Wayne saw an ENT specialist in Halifax who said he could see any
problem.
He again saw the Respirologist who said there was some scar tissue in
the lung but he didn't see this as a problem with Wayne's breathing.He
ordered a CATscan and Wayne is still waiting to have that done.
Wayne's condition continues to worsen .His walking gait is off,he tends
to round his shoulders and walk in small steps ,he is short of breath
and tires easily, the stuttering continues and his speaks very fast and
soft,has tremors at times though not often and not really very obvious
,his writing has become very small and hard to read and becomes more and
more dependent emotioally.
After the tests his family doctor told him they really didn't know what
the problem was and that he is too old for MS and too young for
Parkinson's.He had no suggestions as to what to do next .He felt the
neurologist might know more if he saw him in 6 months.We are afraid with
his conditioning worsening that the waiting may be causing damage that
could be prevented.Even if there is nothing else that could be done we
feel that if we at least knew what we were dealing with it could help
emotionally.
At present his meds are Vasotec 5mg
Warfarin sodium 2mg
Sotolol 80 mg (replacing lanoxin and rythmol starting this month.)
Vit E
Wayne also has a sister age 55 or so who is now in a home because of
some form of dementia.Also information from some grand aunts lead us to
believe there may have been some neurological problems such as being off
balance in other generations.We do not know if there is any connection
but add it just in case .
If ther is any suggestions you could make they would be greatly
appreciated.
Linda McNeil
