Betty, thanks for chiming in and letting us get to know you and your situation.
I wanted to tell you that some of us have had improvements several years
after the 2-year mark. So never give up. Your symptoms - fatigue, skin
sensations/not, tingly feelings under the skin, pain, banding - are what we are
all
dealing with, not to mention the balance and walking problems, for those who
can walk. That is what is so great about this website. You can talk, vent,
recommend, enlighten, etc. We can all learn/help from each other, whether it
is emotional help or medical help. I am glad you are
doing as well as you are and,
please, keep emailing us. We can always use input.
Janice
From: Beeclark
Sent: Monday, July 26, 2010 5:59 PM
To: [email protected]
Subject: Re: [TMIC] TM Info request
Hi Craig. My name is Betty, I'm 57 years old & live in northern California. My
"journey" into TM started the morning after Easter in April, 2006 (no previous
symptoms or illness). I woke w/ a numb right arm. I also had intense pain
around the back of my neck & between my shoulder blades. Then I noticed both
big toes felt numb. After the Dr. did an EKG, X-ray & blood test, I went home
to wait for results. That evening, both legs, besides feeling numb, started
spasming & got so bad, my husband went to an all-night pharmacy to get a Rx to
get me through the night. At 2:00 the next afternoon my GP finally said to go
to Emergency. After an hour-and-a-half MRI & Spinal Tap, the on-call
neurologist said I had TM, fortunately at C7 only. However, paralyzed by this
time from the chest down w/no hand function, I spent 4 days in the hospital on
Solumedrol treatments, which arrested the virus, then was x'ferred to a local
recovery center for 4 wks of intensive physical & occupational therapy where I
regained most of the use of my legs & arms/hands. My right leg is nearly
completely recovered. I still have a hitch in my left leg & went to PT 2X/week.
I can walk – though somewhat unsteadily due to balance issues w/the left
leg/foot (also intensified by the use of Neurontin/Gabapentin). I've been left
w/ a kind of surface skin numbness... I have gross touch sensation (I can feel
it if I rub my right leg or upper torso) h owever, if I'm scratched w/
something sharp, I don't feel it. My left leg (the bad one) has much less
sensation.
Ever since, I've spent every week 2X/wk w/a hand specialist because my hand
function never returned completely. However small, I have gained progress over
time in strength & function thru the use of splints & various exercises, as
well as two surgeries to "re-route" minor tendons to function for the damaged
ones. I am now doing my own home-therapy as all that's left is to strengthen &
"teach" these minor tendons to take over. Craig, since it sounds like you are
experiencing the same hand “dis-function” as I, you may want to consult w/ your
Dr. about a tendon transfer for your hand(s). If it looks like something that
might help you & your physician would like to consult w/ my surgeon, his name
is Dr. Michael Grafe at Redwood Orthopaedic Surgery Associates, 208 Concourse
Blvd., Suite 1, Santa Rosa, CA, (707) 544-3400.
In addition to my leg/hand issues, I also have no temperature sensation from
the bust down. At times of stress, extreme cold or if I go beyond my pain-med
cycle, I also get the intense "banding" around my torso. It is exacerbated by a
hyper-sensitivity to certain types of fabrics. I can no longer stand to wear
polyester-type clothing against my skin. The smooth satiny or polyester knits
make my skin feel like it's crawling or burning when I move in them. I now try
to wear only natural fibers, although some cotton-polyester blends are okay for
a while – just not all day.
For nerve & pain management, I am on a 6-hr. med cycle of (3) 300mg Neurontin
(generic=Gabapentin) & (1) Hydrocodone-APAP 7.5-325 (generic=Norco). By taking
them 4X/day (every 6 hrs.), I keep a more steady dosage in my body. (I was 1st
prescribed 3X/day - morning, afternoon & before bedtime; but the stretch in
between was too long & by the time I woke each morning, I could barely get
myself out of bed to walk to the bathroom. I told my GP I needed to shorten the
time in between by taking an additional dose. She & my Neurologist both agreed.
By the end of each cycle, I'm more than ready to take the next dose, but at
least I am able to be out & about & do minor housework. I'm not so far gone I
can't function. Don't know if I'll ever be able to stop taking the meds, but if
not, so be it. If they help me function, that's what it takes.
While I'm thankful for as much as I've recovered, the loss of hand function &
frequent physical fatigue forced me to quit my job of 31 yrs from HP/Agilent
Technologies. Even though I'm mobile & can drive myself anywhere, after trying
to go back to work part-time after a year of therapy, I found myself way too
tired. Working 4-and-a-half hours a day actually meant a 6+ hour day for me,
w/15-min. drives both ways & an hour or more to get ready in the morning. I
would come home & collapse. It was all I could do. Forget housework, cooking,
etc. I finally gave in & went out on permanent disability. Though I miss the
social interaction, I don't regret quitting. I was 53 when dx'd & had two teens
& a husband. Thankfully, all three, along w/my mom & sister, have been my rocks
& have been completely supportive. I am now capable of taking care of my own
personal needs, but some things are still very tiring. My 19-yr-old daughter
goes grocery shopping w/me every week. She pushes the cart & grabs items too
low or high for me to get & loads/unloads the van. I so love this "bonding"
time w/her & it makes a taxing chore more enjoyable. I started this task riding
the store's electric cart, then "graduated" to using my husband's aluminum
hiking sticks to walk the store. I'm now able to walk it unaided, but I am
usually pretty worn out by the time we get all the groceries home & put away.
I know I've rambled on, but I feel the more info each of us has serves to help
others better understand what is happening to our bodies. Each of us discovers
new & better ways to deal w/ this awful thing by trial & error. By using this
forum, we're able to reach all over the world to help each other get thru each
day a little easier. I would like to recommend to everyone w/limited hand
function who has difficulty cutting bread or meat, etc. that you try using a
"Swedish" knife. It’s an "L-shaped" knife (an upright handle allows for
increased leverage when cutting while keeping the arm & wrist in a neutral
position). It can be found in the "Functional Solutions" catalog through North
Coast Medical, Inc. in Morgan Hill, CA (ask your occupational therapist to get
one or go to their website: http://www.ncmedical.com & enter “Swedish knife” in
the search field). It has made all the difference in the world for me to be
able to cut things myself. The North Coast catalog also has several other
utensils w/the same type of handle. For those w/diminished hand function,
there's also a "Swedish Cutting Board" that holds items down securely so you
can cut one-handed. This catalog has a wealth of items for those in wheelchairs
and/or w/limited abilities. Well worth checking out! I'm grateful to my hand
therapist for giving me a catalog to keep.
Life w/TM is hard enough not to do all we can to make it as easier. It goes a
long way to help combat depression if normal daily activities aren't so
difficult. I don't know how many times I wanted to sit down & cry just because
I couldn't open a jar of peanut butter or cut a slice of french bread to make
toast. Those little activities aren't so much in themselves, but when you add
them up each day, all day long, no wonder we're depressed! Feeling helpless is
the worst of all to me... especially since I was always the one helping others.
Learning to ask for help, then accepting it, are almost as hard, if not harder,
than learning to walk again. The next hardest thing to deal w/ is Patience!
Waiting for your body to heal after being struck w/TM is so difficult. And if
you can't be patient, you get stressed, & if you get stresse d, you hurt
more... & so on, & so on. So try to stay calm, give in to the fatigue when it
strikes, & above all, BE PATIENT! I've heard & read it can take two years to
recover, & many say after that you don't get much better. However, since TM is
not well documented, I refuse to believe they can put any timetable on how &
when we can gain more mobility or function. The human body is an amazing
creation & amazing things have happened before. Nothing says it can't happen
for us too. So relax, eat healthy, exercise as much as possible & be patient.
Best of luck to you & God Bless!
