Hello to all,
I have been rather quiet lately, hoping to be able to write you all
and tell you that I have a new diagnosis. But I can't do that YET! I
definitely think it is good to reach out and ask for everyone's
opinions, help and support. And that is what I am doing right now.
*I was diagnosed with TM in June 2005*. After what was thought to be
2 or 3 relapses within 1 year, my neuro thought I might have MS.
After a repeat brain MRI and a Vision Evoked Response Test, which both
were negative for MS, he discussed my case with 2 of his
colleagues. One said I have MS and to start me on drugs right away
and the other one said I did not have MS and not to start me on
drugs. When I asked my neuro which side of the fence he was on, he
said he liked to know what he was treating and with me he didn't know.
I went to see Dr. Kerr this past August. He was very emphatic that I
did not have MS and he thought it was doubtful that I had TM. Since
I had coronary artery bypass surgery about 9 years ago, he was leaning
toward possibly of vascular disease in my back, ie, maybe a blockage
in my vessels in my spine leading to my lower extremities. So...back
home I came to have more testing. He sent a letter to my local
doctor, outlining his suggested test. My local doctor is very slowly
going through these tests. To date, I have had only 2 of them; the
ultrasound of the descending aorta and an MRA of the spine. (I had
never heard of an MRA) Both of which are negative. So the *next test
is a spinal angiogram.* _*Has anyone had this performed?*_
*My **symptoms began* with a slight low back pain while bending over
the bathtub to give my granddaughter a bath. After that, she went to
sleep in her swing, and I napped on the sofa. When I awoke about 1
hour later, my right leg had an intense needles and pins feeling from
the toes up to the knee. Within in 1 hour, this needles and pins
feeling progressed up to my hip. I went home to bed and the next
morning I could not move my right leg. I had to lift it out of bed.
I had only slight tingling in my left toes and that was all on my left
side. *Now 16 months later*, my left leg has decreased sensitivity
and slight banding, but I have good muscle control.
I remember complaining to my doctor about a backache 2 months prior to
the onset of this. He ordered an x-ray of my back, which was
negative. I also remember around this same time, my bottom having a
needles and pins feeling when I sat in my office chair. I just
laughed it off thinking I needed to get off my butt and go out and
make some sales calls (to doctors no less). My local doctors said the
pain from giving the baby a bath and these other things have nothing
to do with my current problem, TM or whatever! Oh, one last thing I
found interesting. Dr. Kerr said my spinal tap that I had while in
the hospital June 2005 was negative for TM. So could someone explain
why my doctors continued with a diagnosis of TM?
Carol in Culver, IN
Living in limbo, but sure can't do it!
TM T8-T10 (maybe)
----- Original Message -----
*From:* Robert Pall <mailto:[EMAIL PROTECTED]>
*To:* [EMAIL PROTECTED] <mailto:[EMAIL PROTECTED]> ;
[EMAIL PROTECTED] <mailto:[EMAIL PROTECTED]> ;
TMIC-LIST@eskimo.com <mailto:TMIC-LIST@eskimo.com>
*Sent:* Monday, October 09, 2006 8:36 AM
*Subject:* RE: [TMIC] Sudden Onset
My TM started as a feeling of first my right leg going numb,
followed about an hour later with my left leg doing the same. In
all it took less than 3 hours for me to lose all sensation below
my waist. Even though it is over 9 years ago I cannot recall any
pain whatsoever. In fact all of my discomfort started months later
when some feeling returned. Unfortunatley the feeling that
returned was pins and needles, numbness, and horrible banding.
I had my annual evaluation last week with Dr. Kerr and as always
he gave me hope. He is going ahead full steam with stem cells and
hopes to have his first human tests within 2-3 years. As always I
volunteered to be in the first group.Don't lose faith, I truly
believe help is on the way...if not for some of us old timers,
certainly for the younger people in our group.
Rob in New Jersey
------------------------------------------------------------------------
*From:* [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
*Sent:* Monday, October 09, 2006 7:56 AM
*To:* [EMAIL PROTECTED]; TMIC-LIST@eskimo.com
*Subject:* Re: [TMIC] Sudden Onset
My onset was sudden also, but not with numbness, but severe pain.
The pain was from the mid chest to toes, and extreme. I thought I
was having some problem with my back as I have had some low back
issues in the past, but never like this before. To me, it felt
like childbirth was a breeze next to this, and I had natural
childbirth without anesthesia, none at all!!
I had just gone to bed and rolled over to give my hubby Pete a
kiss and hug goodnight when it started, (quite lethal, eh)? When
I couldn't get comfortable by changing positions on the bed with
pillows between my knees, I changed positions all over the bed,
top, bottom, etc. Pete was beside himself trying to help, and I
finally asked him to get me some Tylenol to try and help some.
I stood up and walked around the room a little, but that didn't
help either, so I laid back down. Within 15 minutes I tried to
stand up again and could not. My back just rolled out from
underneath me. That was so scary, and I couldn't stop him from
calling for help at that point. I thought it was just something
that would pass, but he called our son to get me to agree to go to
the hospital, as I was very resistant. I don't remember when the
numbness came, but before long, I was paralyzed from waist to toes
with no torso strength. But, I sure still felt pain at that
point. I was carried down the stairs.
After several hours in the emergency, they wanted to send me home,
but when I told them that I couldn't get into the house since I
had stairs and wanted to be evaluated they admitted me. I am not
sure if my IV steroids started that night or next day, it all
seems like a blur at this time, but I know it was quickly. The
next day I was seen by a Neurologist and given a TM diagnosis
T8-10 within 2 days at the latest.
I was transferred to Stanford after one week for a second opinion,
which was agreed that I had TM, and started my OT and PT rehab.
Then, about 5-1/2 yrs later, my original Neurologist says to me
that he doesn't think that I have TM at all, and that it doesn't
really follow the pattern. Go figure. I don't know why he
originally told me that, or why Stanford Neuro's agreed with the
diagnosis. Another infarction possibly. Hmm!
Hugs to all, Barbara A in Auburn, CA
