Nikki,
I really hope you continue to have improvement. Even 6 years after TM hit me,
I am improving in little ways.
Hang in there.
Janice
From: Nikki Macleod
Sent: Wednesday, May 29, 2013 5:05 PM
To: Dalton Garis
Cc: tmic-list@eskimo.com
Subject: Re: [TMIC] Re: Transverse Myelitis
Hi everyone I hope u are well i am Nikki 26 years old and live with my fiancee
who is also my full-time carer.Amy it just demonstrates the fact that many
people around struggle to deal with so we are left quite alone but if you have
the fight and determination like you we can get through it. Like you also I was
affected highly at C4. This is my story below:
On Mon 14th Feb 2011 I felt really poorly and had had a rough weekend. I was
suffering from a chest infection but I felt somewhat different that day and was
in bed really early as I was suffering with a severe headache so bad I couldn't
stand light or lift my head from the pillow. I went to sleep and woke up with
my partner at 5am, and at that point I couldn't feel my legs or move them but
thought I had trapped a nerve. I also still felt poorly but I also had another
symptom which was a painful and stiff neck. After waking up at 8am when my mam
came to my house the numbness was going up my body and my noon I could only
move my head. My fiancé and mam decided to call 999 and I went to the Emergency
Department had an MRI, transferred to a specialist hospital where I was put on
5 days of IV steroids and weeks of oral steroids, I was also given plasma
exchange but it was too late as I hadn't been took seriously on my previous
visits to A&E. Luckily I could still breathe on my own and after intensive
physiotherapy over 2 years I gained partial usage of my arms which has improved
over time. I was 23 years old when TM struck and spent my 24th birthday in one
of the many hospitals I was in and put on a brave face for the sake of everyone
else. Even at the time doctors have told me I will never walk again and i have
been told that over and over again. Its something which I have came to terms
with but others haven't and recently I've had my Achilles' tendons cut to try
and correct the severe foot drop & toe drop as I won't need them to walk.
I have a lot of continued support of my fiancée who has been my rock and total
support through all of this - I couldn't have got through it without him. He's
one in a million!!
The saying "you don't know what you've got til it's gone" has never been more
fitting. Who thought that knowing when you need the toilet would suddenly one
day be the only thing you ever want BUT he ho that is why WE HAVE EACH OTHER to
bounce and share things.
Sorry for rambling!
Nikki
Durham, UK.
Sent from my iPad
On 29 May 2013, at 21:39, Dalton Garis <malugss...@gmail.com> wrote:
Janice;
Has Amy tried Lyrica? For me it is the only medicine that has kept the bee
stings away.
Dalton (TM Class of '2009)
From: Janice Nichols <jannic...@gmail.com>
Date: Wed, 29 May 2013 11:38:19 -0500
To: amy shultz <mic...@hotmail.com>, TM group <tmic-list@eskimo.com>
Subject: Re: [TMIC] Re: Transverse Myelitis
Resent-From: <tmic-list@eskimo.com>
Resent-Date: Wed, 29 May 2013 09:38:16 -0700 (PDT)
Amy, I think we have talked before, but I did not know the extent of how
TM left you. I am so very sorry that that damn TM did this to you and at such
a young age. You are a very
courageous lady. You have not let TM claim the real you - just your
body. But, it would be pretty hard to live with. Family and good friends
are a tremendous help in this situation.
Some with TM have lost spouses, family, and friends due to TM. They just
don’t want to deal with it – so you are lucky in that way. I am too.
Keep bugging the doc’s to find a medication
that can ease the pain – with all that is out there now, there has to be
something for you for pain relief.
Keep in touch with us and let us know what you are doing and how you are
doing. Believe me, we care.
Janice
From: amy shultz
Sent: Thursday, May 23, 2013 7:40 PM
To: TM group
Subject: RE: [TMIC] Re: Transverse Myelitis
My TM story began in March of 96. I was 19 yrs old and had graduated from
High School and had a soccer scholarship to Notre Dame. While having an MRI on
my jaw for TMJ the doctors said I had an "unrelated" seizure. After waking up
in the hospital my arms were really heavy and had horrible pain around my mid
section, and couldnt move my legs. By the next morning I couldnt move my arms
or legs, couldnt talk. Couldnt breathe. I endured test after test after test.
They kept thinking MS as my mom has MS but they couldnt confirm it.I was in a
rehab hospital and a nursing home for a total of 14 weeks. After many weeks I
was finally diagnosed after a second MRI showed lesions on my spinal cord at C
4-5. Due to it being so long since I had had the initial attack and doctors not
familiar with TM, I was not treated with any steroids or any other treatment.
After intense therapy and many prayers after about 8 months I got use of my
arms. Not 100% but some. My arms came back very slowly. I was in therapy for
months and months. I have yet to show any improvement with my legs and am
ventilator dependent. I had a neurogenic bladder and bowels. I had my bladder
removed in 03. I havent show much improvement after the one year mark. I hold
on to hope that one day there will be treatment for us, or others like us. I
deal with horrible pain and spasms daily. Something I wouldnt wish on anyone. I
have been unable to return to school. It seems I am in and out of the hospital
so much it makes doing anything nearly impossible. Last year alone I was
inpatient 13 times. Not counting ER visits. I am on over 30 medications a day.
I get exhausted very easily and nap alot. But I still enjoy having fun and
hanging with family and friends and this TM will NEVER stop me from being me.
Amy Shultz
Columbus Ohio
----------------------------------------------------------------------------
From: heyjude48...@aol.com
Date: Fri, 26 Apr 2013 23:09:12 -0400
To: tmic-list@eskimo.com
Subject: [TMIC] Re: Transverse Myelitis
Hi Everyone!
It's Jude Hoops. I was just reading the quad list and they are talking
about their injuries at what level they are injured, how it happened and when
it happened. Do you think that that would be something we could do too?
I think it might be interesting to know how we were all injured or got sick
and how long ago it was. We've all been on this list for a long time now and I
was wondering whether any of us had gotten any better over the years.
Let me know what you think. Just write a small paragraph about how you
came to have TM, what level your injury is at and if you have seen any
improvement over the years.
I love you all so much and have been thinking of you.
Hugs,
Jude (TIAD)
