Sorry if this seems off topic to those of you who regularly use this
newsgroup. I have been reading for some weeks in the hope of finding
something but to no avail. Hopefully SOMEONE will have an answer.
Since Feb 1994 I have been diagnosed with sleep apnea which is severe as it
can get, nowadays and still be here to type about it. Yes, I have been
through the whole box and dice of treatments but of those that are worth
doing, nothing works, CPAP and the like actually makign me WORSE. I
mentioned, back when I was diagnosed, about sleep apnea to my mother,
describing symptoms such as not breathing for over 5 minutes at a time and
she said that I used to do that in the crib. It seemed strange but I had
nothing else to go on till the middle of last year when an email friend of
mine told me to stick my finger down my throat. Well, I like jokes even if
they are practical ones ON me so I did it for a laugh and nothing happened.
I mean NOTHING. I could actually feel the start of the nasal passage where
it starts inthe throat, tonsils and all but nothing else, no gag, nothing
happened. I didnt think much of this, replied in a humorous vein and she
replied telling me to go get checked out for Arnold Chiari malformation
(Chiari, for short). So, off I go for an MRI in December. MRI reveals what
the neurologist says is not ACM but white areas ont he brain. He said they
were not consistent patterns with Parkinsons (not that I asked about that
anyway) but were there anyway, he didnt know what they meant and said they
were "probably benign" and sent me on my way without bother about anything
else. "Probably benign"???? If he doesnt know what they are, can anyone
explain to me why they are nothing to worry about?
Further, I got home with my MRIs, logged on and checked out a typical MRI
from someone WITH Chiari and also a diagram of a normal brain and drawings
of the extention where Chiari would occur when present. I checked closely on
my MRI and sure enough there is, to my admittedly UNTRAINED eye, just the
slightest sign of the tonsils of the brain being lower than where they
should be. Please dont lecture me on the dangers of self diagnosis. I know
them and I tend to shy away from them but I am getting desperate now and
determined to find what it is. I have lost most of the taste sense, can
rarely smell ANYTHING unless it is REALLY strong, have trouble with my eyes
that is inconsistent with age and medical history of myself or family,
cannot feel changes in temperature much at all, able to go outside at near
freezing in a T-shirt for some time. Further, my balance which was acute as
a child is now faltering and I drop and fall now and again (once a month
roughly) for no reason, out of it without a reason, no energy, no anything.
Heart rate goes up and down like a yoyo and I get atypical angina pains and
have been recorded with the typical angina pattern on a monitor though after
an angiogram, I was told (in 1993) that I have the heart and arteries that a
20 year old athlete would die for. Pain in neck and shoulders begins for no
apparent reason quite easily though thankfully I know how to adjust my own
neck to relieve most of it and lower back pain is a real killer most days
and pain in joints, until recently not a thing, is now on the increase yet I
live in Australia where it is SUMMER.
I know I have a mix of strange symptoms but those plus more point to what
Chiari is all about. If I left it at one neurologist and didnt investigate
further, I would be here with all this and feeling like there is no answer,
slowly going mad. Does anyone have ANYTHING that can help? Apart from
travelling to America to see a neurologist which is, quite frankly, beyond
my means, I cant think of a way that I may get help in Australia. Medically,
we arent a backwater but I believe that we are well behind the 8-ball so far
as Chiari is concerned and I need to be able to find what is wrong with me
if not Chiari or find a way as a non-medically trained person to train a
neurologist in Australia to realise what the American neurologists are now
saying - that Chiari can occur with only 1 or 2 mil herniation. As you who
are medically trained may understand, having someone like myself, untrained,
trying to tell you that you may be wrong and why is something that doesnt go
down well in the medical profession. Added to that, in the specialist field
in Australia, there is often the "Old school tie" syndrome that basically
says that if it doesnt come from Britain, published and verified, it cant be
so. In the meantime, I get worse and every time I get the slightest little
thing like a minor cold or flu, I go down like a ton of bricks and dont
recover to the spot I was prior to the incident. I have people who depend on
me so cant go on like this and need to get something done and not dillydally
while Australia comes up to date with the rest of the world because it is
affecting me in every possible way now.
Any help would be really appreciated. Please note that I have an anti-spam
bit in my email reply address which has to be removed in order to email me
should you wish to. Reply in the newsgroup, if you feel it appropriate,
would be good as I read in here daily.
Thanks in advance from "Last Chance".
Remove the anti-spammer stuff.