>> While I am pontificating here I would also like to stress that TM
>>is NOT a grab bag diagnosis --which had been suggested here many times. It
>>is a very specific illness with clear definiton of what it is and what it is
>>not --I remember a posting the other day of a person who was told by their
>>doctor that he/she wasn't sure if the person had Guiallan Barre --it was
>>TOTALLY ludicrous -- loss of sensation with muscle control maintianed is the
>>exact opposite of GB --wish some of those doctors would be not so damn
>>snooty and open their copies of "Current Dignosis and Treatment" --even in
>>front of the patient --nobdoy knows everything although some physicians seem
>>very unable to give up on that myth ;-( (it gives us all a bad image and
>>"I" do not like it!!!)
>>
>>bryan
and Amy replied
>>
>One of the real issues seems to be having access to Doctors who keep up with
>what's new. Our real frustrations are related to getting doctor access and
>attention. Steve's (my husband who has TM) experience was really negative.
>When he first started having symptoms, he saw our GP who prescribed some
>medication that didn't have any effect at all. It took a week to get an
>appointment with her (and she is just the PA, not the MD) and all she did
>was order up some tests (mri's). It took another week to schedule that,
>three more days to read the darn things and then two more days to call him
>back to take more pictures. Then, they recommended a neuro-surgean. It
>took a week to get to see him, only to have him refer the case to a
>neurologist. All this time, no useful treatment or even relief medication
>was provided.
>
>It was a full three weeks before Steve got on the steroids that actually
>slowed down the process of the disease and another month before he was
>diagnosed with TM and prescribed Neurontin which actually was the only
>medication that seems to help him. This has been extremely frustrating.
>
>This doesn't seem to be the way to run things. Anyone got any comments?
>
>Amy Thropp
Well,,,,, I have a confession to make --sort of -- I am wondering
if I should bring a suit against the "care" I received. In my case it's a
bit hypothetical but to me VERY frustrating. My viral illness was picked up
in the Caribbean --you know --don't drink the water or eat fresh veggies --
why listen to that, eh (that last little bit is a "Canadianism" --for those
that don't recognize it ;-) But I had "severe" diarreha for two weeks, then
one nite of intense back pain and the next day by noon i was lying paralyzed
in ER -- no tinglling --no gradual loss of strength --just pain and then
BOOM! I went to ER with the back pain (the nite before) -- NEVER do that if
you have a pony tail have lost 30 lbs in the last two weeks and haven't
slept for almost two days --they will think you are an addict looking for
drugs --so instead of getting admittted and having some tests done --i got a
shot of Torodol and sent home --then when I awoke after a nap with no
movement in my legs, my GP sent me to a neurosurgeon --suspecting that I
(who was a jock) had probably slipped a disc (bilateral --VERY rare). So we
got to ER and despite the fact that I was shivering and nearly vibrating off
the table the ER physician said the policy was that he could not see me
because I was referred to someone else (despite my very rapid deteriioration
--my wife and sister in law "begged" him to a least look at me) The
neurosurgeon was in the OR and could not see me for another four hours!!!!!
--how many mistakes were made here I wonder --if i had been re-hydrated the
nite before would my case have been less severe? if I had seen the ER doc
wouldl I have recieved steroids sooner --yes I would have --the "evidence"
suggests they must be admininstered within 6 hours of the "attack" -- if,
if, if --ANYWAY,
When i eventually saw the neurologist it took him virtually no
time to confirm that I had TM --he looked at the MRI and said this is TM,
NOT MS and here's the treatment --so he was great --and considering that in
our area there is probably only one case every two years, he must be
commended --but the rest --and to give your doctor some credit, your husband
had a very slow "presentation", obviously and did do an MRI --which, if they
repeated it must have been suspicious --and if then it was still not obvious
--well --i won't comment further ,,, BUT
Yes, it would be great if doctors kept up -- I personally go to
the APA every other year and cannot understand how anybody dares practice
without that sort of coninuing ed --mind you,,,,, i have heard that some
insurance companies in the States (my favorite bone to chew,eh) sometimes
decide that a test was not necessary and leave the MD(or the patient)
holding the bag (or the bill).
Medicine is imperfect --as are the people practicing it --and
honest errors in judgement occur -- but if you're on our end of the stick
it's infuriating at times. Guess this rambling has got me thinking again
about going to see a lawyer --now THERE is a perfect profession ;-) If I
wasn't doing self cathetrerization I'd probably pee my pants over that one
!!!!
enuff --for now !,,,, bryan