I've been lurking a couple of weeks and thought I'd introduce myself.
Five years ago at this same time of year, I thought I was finally over
the flu (and asthma problems) I had had almost a month. I was ready to
have a week off and relax. My feet and legs were a little tingly, but I
blew it off. Then I had excrutiating pain in my lower back and rushed
off to the chiropractor, who couldn't find anything out of whack.
The pain went away, but then my legs started getting weak and feeling
strange. The ER room resident (initially excited because he thought my
legs started tingling AFTER I saw the chiropractor) lost interest but had
my back x-rayed and then sent me home with a probable problem with muscle
spasms. Mostly, they were very nice but incompetent (George Washington
University Hospital)
My intestines quit working, so I had colonics, which didn't work to get
my intestines moving again. Not having a regular doctor, I finally
called my OB/GYN's office and got her backup, who told me to take
laxatives with casgara and go to the ER if it didn't work.
I went to a different ER/different hospital (Washington Hospital Center),
where they were rude but decided I wasn't fit to be home alone any more,
so on January 1, 1992, at 4:00 a.m., the head trauma honcho told me it
looked like I had a progressive, degenerative nerve problem. He also
said it was too bad I didn't need surgery, because surgeons work all the
time; he said I'd never see a neurologist on New Year's Day. He was
wrong. The neurologist said TM or MS, but more likely TM.
My bladder had also quit functioning, even though I was ignoring the
problem, so I was lucky to be admitted when I was, with the overload on
the bladder only causing bladder spasms (bad enough) but not far enough
progressed to cause kidney damage.
I could walk with a nurse on either side but with no balance and no
control and extreme weakness.
I couldn't get an MRI on January 2 because Children's Hospital had the
MRI that day, so in the meantime they did a spinal tap to rule out a
tumor pressing on the spine (and immediate surgery) until I got the MRI
on the next day.
The neurologist said I could try prednisone, but also said there was no
evidence that it would help. I declined but the next day was harassed
into taking the prednisone by my attending physician, whom I had never
met before and was quite obnoxious. I never saw him again, but the
prednisone, which had no noticeable effect on my incomplete paraplegia
(T-5), was later determined to be exacerbating my intestinal problems.
The MRI showed swelling affecting T-5 and down, with minor swelling above
T-5. After nine days of various diagnostics, including a weird team of
gastroenterologists that had to be reined in and bizarre insurance
problems, I was moved to the National Rehabilitation Hospital, where they
did many more tests and diagnostics, and eventually physical,
occupational, and every other kind of therapy they could think of.
At the worst, I couldn't walk; my bladder and intestines didn't work; I
was hypersensitive from mid-chest down (with a lot of pain around my rib
cage) but especially in my feet, which were sensitive to loud noises; and
I lost proprioception from the ankles down, lost all the strength in my
legs, and had no sense of balance. I also can't sweat except in my upper
body, which is a problem in hot, humid weather.
After four weeks of therapy (and harassment by the insurance company), I
left on two canes barely able to get up the one flight of stairs to my
apartment.
Within a year and a half, I quit using any cane except in foul weather or
visits to hilly landscapes. I was still very weak, though, and had some
balance problems. My intestines worked after a fashion (not like
before), but enough to excite the nurse practitioner when I told her I
was off stool softeners and laxatives. My bladder regulated itself, for
the most part, relatively quickly, and I had quit using catheters within
about four or five months of onset.
My acupuncturist deserves most of the credit for the improvement in my
intestinal function, which he achieved with herbs and acupuncture. The
acupuncture helped enormously for the extreme pain I experienced,
particularly in the left leg and rib cage. An exercise bike helped me
regain some of my leg strength. There was some speculation that my good
leg strength prior to the TM helped in regaining function.
For the last couple of years, I've been going to a chiropractor who also
does cranio-sacral therapy. The cranio-sacral helps the flow of fluids
around the brain and spinal column. The chiropractic keeps my spinal
cord/hips/neck from being so stiff. I have a low-level chronic pain
around the T-5 level because the tension seems to build up so much
between the freely moving spinal column above that and the stiff area
below.
My leg strength and balance have continued to improve over the last
couple of years. I can't walk quite as fast as I could before, can run
just a tiny bit, still have a tendency to foot drop and have scuffed toes
on all my shoes. My balance is good except for the occasional lurch
(when my concentration/attention is distracted) that makes me look drunk.
In the last few months, I've had some tingling episodes in my legs that
make me want to believe the nerve system is trying to reinstitute normal
sensation.
ACTUAL QUESTION: Has anyone had episodes like this that preceded a
return of normal function?
I have been able to see (incredibly) slow progress even to the present
day, so I'm hopeful that I can continue to improve. I do know that to
have healed this much is already a blessing.
One of my worst problems now is the weight I gained, particularly during
the first three years. My plan for the new year (when I've finished my
thesis) is to intensify my exercise to increase my leg strength and
balance and decrease my weight.
I'm glad to find this list and other people who share this experience.
Sorry this is so long.
Happy holidays,
Aurore
ableck(AT)nas.edu