> Sorry about this people, but I've thought of more things I need to know.
>
Don't feel you ever need to apologize about asking questions here -- that's
one reason we're here. :) I've asked tons of questions over the months
myself!!
> How would I know if I had a sign of recovery.? I asked my doctor and he's
> not
> too sure, so I thought someone here might know.
> Is there any other way to absolutly diagnose TM, other than a spinal tap.?
TM is usually diagnosed both by the symptoms and by running other tests to
rule out other causes. In my case, I had a CAT scan immediately to check for
stroke, brain tumors, aneurysm (sp?) or bleeding in the brain. They did a
myelogram (sp?) the next day or so -- I think they would've gone to an MRI but
it was Labor Day week-end and no one was there to run it -- to check my spine
for bone growth, tumors, etc., that would be pressing or interfering with
nerves. They also did a spinal tap then -- I forget specifically what they
check for there but I know one substance in your spinal fluid indicates MS,
but mine was clear. They did do an MRI of the brain later, and no lesions were
found. Along the way they did oodles of blood tests for everything from Lyme
disease to Vitamin B deficiency to lupus to Epstein Barr virus -- I can't
remember what all they tested for, but there were pages and pages of lab work.
All came back normal except the one for ANA antibodies, which is an indicator
for lupus, but that was rechecked a few months later and was normal. Others on
the list have had more tests. Since all of my test results came back okay,
based on the symptoms I was diagnosed with TM.
As for signs of recovery...I would say any improvement in any of your symptoms
is good news. Nerves are odd things; like when your leg falls asleep, instead
of just "waking up" again and getting on with life, it has to go through all
that pins-and-needles commotion before getting back to normal. That's what
some of TM's odd symptoms are from -- the nerves trying to find ways to
reroute messages since the damaged areas are unable or are slow to "wake up"
again. (Sometimes I almost picture nerves as very temperamental and throwing
temper tantrums -- silly, I know!)
But also, I think for many of us, what recovery we've had has been kind of a
two steps forward, one step back kind of thing rather than a steadily
improving thing. That used to distress me greatly when I'd have some
improvement and then slip back again, but I think I've kind of learned to roll
with the punches and acknowledge "bad days" without panicking that I'm having
a relapse. Some on the list have had little to no recovery at all; some have
improved to very close to normal. Of course, we probably don't hear from the
ones who have recovered greatly because they probably don't feel the need of a
support group like this and feel TM is no longer a major factor in their
lives, so there may be more of them than we realize. Most of us are
"inbetween." I remember my neuro. saying that I should recover within a
certain time period (I can't remember if he said 1 yr. or 2), and if I didn't,
I'd be used to it by then. I thought, "Nope, that's just not acceptable!!"
It's been two years and almost nine months, and while I have recovered a lot,
I haven't recovered completely, and I've found I am "used to it" (most of the
time) though I still pray and long for completely recovery. And some on the
list have reported continued recovery after several years. It varies greatly
from person to person.
> Would pregnancy cause lots of problems with TM, or is it like MS and causes
> a
> kind of remission.? Not that I'm considering having children, but I'm
> curious.
A few people on the list have been pregnant after TM with no problems. I would
think it would need to be handled like any other major life change or stress
on the body, acknowledging a need for rest, etc. When I asked specifically
about pregnancy, my neuro just said balance might be a problem with the
lopsided weight gain of pregnancy, but would be possible. Some medications
might not be good for pregnancy.
> A couple of days ago, my right leg and foot swelled up. My right leg was
an
> inch fatter than my left and I could hardly move my foot. I put a bag of
> frozen peas on it and it eventually went down. There was no pain at all.
> Has
> anyone else had this happen, or know what it was.?
My left hand and right calf and foot experience some swelling, but not that
much. Some of it is constant -- I can only occasionally get my wedding ring
back on. But sometimes it increases when I'm very busy and active or hot.
> I know this is very generalized, but how much can most of you do for
> yourselves (eg. personal care, housework, shopping), and what kind of
> disability aids do you need.?
>
I can pretty much function normally. I can handle most housework but have
trouble on my hands and knees, so my dear husband scrubs the floors for me. I
can shop, etc., but "give out" sooner than before and feel more comfortable
with a cart or something to push. Malls are not quite as hard as they used to
be, but I'm still not real comfortable with wide open spaces with nothing to
grab on to. And urinary frequency causes me to not be too far from a restroom
and has hindered a few activities -- I've not gone on some activities with
ladies at church because of that problem. I know they'd understand, but just
don't want to hold everyone up or have to make multiple stops, etc. Of course,
all of this is an improvement over the first few months -- at first I could
give myself a sponge bath, eat, swing myself over to a bedside potty, walk
somewhat with a walker...and that's about it.
> BTW, it's going to be another month before I get to see a physio. My
doctor
> says he's very busy and says that I'm not a special enough case to jump the
> queue.!! How bad would he like me to get.!!!
>
Boy, he knows how to make you feel special, doesn't he? :)
> Sorry about all the questions, but I'm trying to find out as much as I can,
> so
> my doctor can try to understand what it's all about. I'm the only patient
> he's ever had with TM, so he's learning too.
>
I mentioned this to someone else just a while ago, but you might try going to
the TMA web site at www.myeltis.com and printing out the symptoms and
diagnosis sections there as well as any other sections there or at the TMIC
web site that you think would be informative to your dr. and sending or giving
them to him. We'd all like to have drs. that are familiar with TM, but one who
is willing to learn, research, and listen is the next best thing.
Hope I've been of help!
Best wishes,
Barbara H.