TheBanyanTree: From Janice - Mutant mutates or just gets older?

[Sachet]

For some inexplicable reason her post bounced.

So here 'tis....

_______________________

When I was a girl my mother would sometimes complain about a "numb spot" on
one or the other of her feet.  She would reach down, rub the area and
grimace with pain saying, "Oooh!"  It never occurred to me at the time to
wonder how a numb spot could be painful but now I know that what she was
actually describing was dysaesthesia, or painfully altered sensation.  

After a while she would stop complaining so I forgot about it.  Mum's numb
spots just came and went and everything else went on as usual.

Therefore when I got my first "numb spot" and it was precisely in the area
my mother had tended to complain about I wasn't particularly worried.  After
several weeks, the spot started feeling more or less normal again and I
forgot about it until it happened in the same spot on the other foot.  But
past history indicated that there was no cause for alarm.  This, too, would
pass.  And it did.

For the last twenty odd years, up until about eighteen months ago, the "numb
spots" have recurred at odd intervals, have affected only my feet and have
caused only trivial disturbance to my life.  I learned that my brother and
sister also have attacks of the "numb spots" and have not been
inconvenienced by them.  If this is a problem then it's a very minor one.  

Then I had an episode that affected my hands.  That worried me a bit but it
passed very quickly so, again, I forgot about it.  

Just before Easter this year my wrists started aching and within a couple of
days both my hands were swollen, several of the small joints were hurting
and the pads of all my fingers were again tingling painfully.  Whenever I
touched anything it felt as though I was rubbing my fingers on coarse
sandpaper.

After a few weeks of that I was ready to start crying and arranged an
appointment to see a neurologist.  I was hoping for a quick course of
steroids, or maybe Tegretol, or some other nerve stabiliser; anything to get
my hands feeling normal again.  But it was too bad for me.  There's a
shortage of doctors in Australia and an even greater shortage of specialist
neurologists.  I had to wait until early August to see the man.

By July my hands were feeling much better.  The tingle was still there, as
it is now, but at least it wasn't painful any more.  But before that, in
June, something else had happened.  I was getting out of bed and felt a very
strange shuddering sensation.  Then it happened over and over again.

My husband said, "Maybe it's L'Hermitte's sign."  It's been a long time
since I thought about all that medical stuff so I needed an explanation.  He
said, "Put your chin on your chest."  Oh, yes, that did it; electric shock
feelings going down the underside of both arms and down the front of both
legs.  So when he wrote the referral he mentioned the L'Hermitte's sign and
organised for me to have an X-ray of my cervical spine.  That showed nothing
that could account for the symptom, just your standard aged neck bones.

By the time August came around, being an excellent Googler, I'd decided that
the "numb spots" were actually Wartenberg's Migrant Sensory Neuritis, a rare
disease for which no treatment is known that is reliably effective.  But so
what?  All I wanted was a prescription for something, for just in case, to
see if it might, possibly, help.  I really don't want to have to put up with
the "numb" hands for an extended period again if I can find something that
will help.

The neurologist, however, being cautious, would not oblige me.  It was
possible that the "numb spots" problem was an even rarer Hereditary Sensory
Neuropathy of some sort but even if it was that would not explain the
wretched L'Hermitte's sign.  That had to be investigated first.  So I had to
give about a pint of blood to check for various illnesses: pernicious
anaemia, multiple sclerosis, Sjogren's disease or some other, unspecified,
auto-immune disease.  And, because the cervical spine X-ray was so normal
(for a person of my age) I had to have an MRI of the head and neck.  And
that experience is what prompted this post.

Has anyone else had an MRI?  I've had a CT scan before but it didn't prepare
me for the MRI.  The tube in which you lie is considerably smaller.  It is,
in fact, coffin-like.  While in there I shut my eyes and pretended that I
was somewhere else.

The scans must be repeated many times and each scan lasts three or four
minutes.  The noise is so great that they put little plugs in your ears.
Kaboom, brrrp, ticka, ticka, bzzzt, klunk, goes the machine.  Some scans
were almost musical.  Add a bit of guitar and you could be at a dance party,
I presume.  I've never actually been to a dance party.  Other scan noises
were boringly tedious or monotonously distressing.  And it gets warm in
there.  Strange patterns pass across the screen of your closed eyelids.  Was
that the magnetism affecting me or what?

They said, "Don't swallow".  I have trouble not swallowing at the dentist.
Breathing purely through my nose while in a recumbent position is something
I have to work at consciously and sometimes the whole, "I'm going to drown
on my own saliva if I can't swallow right now," thing gets me panicky.  I
swallowed, more than once, during one scan.  I couldn't help myself.  And
then, when I confessed to the radiographer he didn't seem too worried.  I
wish he'd said earlier that it's not absolutely vital not to swallow.  

Around 45 minutes after the whole experience started the radiographer said
that he needed to speak to the radiologist to see if any more views were
required.  He came back and said that the radiologist wanted to see where
the blood vessels are in my brain.  Three more scans, with contrast medium,
were required.

And that's really the main reason for this post.  I've had contrast studies
before with no problems.  Some people can't tolerate the dye but I've been
fine with it previously.  Yet now I think of my aunt who was raised on a
dairy farm, married a working dairy farmer and then, in her mid 50s, became
allergic to dairy products.

A couple of hours after coming home the top of my left thigh started to
hurt.  The skin there was a bright pink.  Over the next several hours the
pink turned redder and bluer until it was haemorrhagic purple.  As the
evening wore on staying upright for more than a minute or so without feeling
faint got harder and harder.  Today my arms and trunk are abnormally pink,
my legs are a mess of confluent pin-point haemorrhages and my hands are red,
swollen and infuriatingly itchy.  I've popped veins and capillaries all over
the place. 

No more contrast medium for me.

Janice