Carol:
I cherish my leg brace (named him "lefty".)
I do get stares, but I couldn't keep my balance and it was wrecking
my knees (I now have a Baker's Cyst on the back of my knee from the
knee being bone on bone)
The brace gives me such confidence!
Good luck!
Susan, Phx, AZ
On Jan 8, 2012, at 2:24 PM, Carol E wrote:
My neuro just ordered PT again and to be fitted for a brace for my
drop foot. I have not scheduled it yet and while part of the
reason was the holidays, the other reason was I didn't want to wear
a brace or the stigma associated with it. I probably need to
rethink it.
At this time, I take no medications for the TM. I have in the past
tried Gabapentine, Baclofen and Lyrica (not at the same time).
This was about 2 years ago when I was working and I just couldn't
seem to adjust to them and work at the same time. I don't consider
the pins and needles sensation that I have to be very bad. I can
tolerate it. It's the feeling that I am walking on tree stumps
that bothers me more. Cold temperatures also make my legs very
uncomfortable.
Maybe 2 or 3 times per month I have to take Hydrocodone, but that
is for some bulging disks that I have. I am getting a steroid
injection in the morning for a pinched nerve. I'm sure walking
cockeyed with the cane does not help my disk problems. My right
knee and hip has also been bothering me. My knee is clicking but
both just ache. Sometimes I think, "what NEXT", but I am so
thankful that I am as good as I am.
Carol
CC: [email protected]; [email protected];
[email protected]; [email protected]
From: [email protected]
Subject: Re: [TMIC] Extent of your TM? Pins and Needles
Date: Fri, 6 Jan 2012 13:36:24 -0700
To: [email protected]
Betty:
I have many residual affects as you do.
I wear an orthopedic brace on one leg.Helps with my drop foot.
wear orthhodics in all my shoes.
My Neuro meds are: Baclofen, Gabapentine, Savella,Zoloft.
I also rely on Ibprophen
I also have:
daily nausea (I take Zophran daily)
band pain
elbow and hand pain
(carpal tunnel surgery on one hand next week)
Leg weakness
popping knees and a large Baker's Cyst on the back of one because
my knees are bone on bone from walking funny for 20 years!
and I know how lucky I am to have what I do.
I miss my old life.
Best of luck to all of us!
Susan - Phx, AZ
On Jan 6, 2012, at 1:22 PM, Elizabeth Clark wrote:
Patti & Carol…
My case is also very similar to the two of you… woke up with a numb
arm and within 36 hrs., was paralyzed in the ER, given massive
steroids for four days and spent a month at a re-hab facility in
aggressive physical and occupational therapy learning to walk and
use my hands again. I went from using a cane (and wheelchair or
scooter when needed), to hiking sticks, to now only a cane when on
long walks (like the mall) or wearing a light-weight “TrueLife”
brace on my left leg to help with my balance – it prevents tripping
due to a “drop foot” condition. I also wear a compression stocking
with the brace to help keep my left ankle from swelling.
My question to you is, are either of you on any pain or nerve
medication? I don’t seem to get the pins and needles sensation or
hot/cold feeling unless I am at the very end of my medication cycle
(I take Hydrocodone and Gabapentin every 6 hrs.). I’ve taken to
wearing one pair of regular socks and adding a pair of “ankle”
socks on top which keeps my feet feeling relatively normal. Maybe I
have just adapted to the feeling after nearly six years with TM.
Actually my knees bother me more than my feet. I get “twinges” at
times and if I torque my body in any way or have to climb my stairs
too many times a day, they get really painful.
Given the extremes that many TM’rs suffer, I too feel very
fortunate my condition is no worse than it is. If this is what I
deal with for the rest of my life, then so be it – I can do it. My
only wish is that they find either some way to prevent it or at
least some way to treat it effectively for all so no one ever has
to suffer – especially the children! It’s hard for anyone, but my
heart goes out to the little ones!
Bless you all,
Betty
(in Northern California)
From: pat cooley [mailto:[email protected]]
Sent: Friday, January 06, 2012 10:57 AM
To: Carol E
Cc: [email protected]; [email protected]
Subject: Re: [TMIC] Extent of your TM? Pins and Needles
Carol your story sounds just like mine. I too now get around the
house without cane/walker but I do use a cane when I gol out. I am
able to walk around most stores hangingj on to the cart but if I go
to stores where I have to do a lot of walking I take my electric
scooter and then I can power shop with the best of them. I still
have the pins & needles and the burning/freezing in my feet and up
to my knees. I know this is the way it will always be since it has
been almost 4 yrs, but I see that I am not suffering as much as so
many of us TMers.
Patti in Wisconsin
On Thu, Jan 5, 2012 at 5:27 PM, Carol E <[email protected]>
wrote:
Jim,
June 2005, I went to bed with severe pins and needles feeling in
my right leg. When I woke up, it was as limp as a noodle. I was
admitted through the ER and received IV steroids, I think it was 9
hours. During my 5 week stay in the hospital, I received intensive
PT. About 3 weeks into my physical therapy, I remember the
therapist told me to try to wiggle my toes. I looked her like she
was seriously crazy. I tried....and they moved (very little, but
they moved). Brought both of us to tears. Before my discharge, I
was walking small distances with a walker and I know use a cane. I
continued with out patient physical therapy for about 2 months. My
power shopping days are over, LOL! but I can walk in, get what I
need, and leave. On bad days, I don't even try it. Both legs
feel very heavy, but my right leg is worse. I too have pins and
needles torture from my toes up to my waist.
Carol
Date: Tue, 3 Jan 2012 11:55:22 -1000
From: [email protected]
To: [email protected]
Subject: [TMIC] Extent of your TM? Pins and Needles
From the discussion of Pins and Needles it seems that most of you
are able to get around and have some use of your legs. I have pins
and needles from my feet to my belly and no use of my legs at all.
And they weigh a ton. Been like this since day one. Did any of
you lose the use of your legs and then get them back? If so, how
long did it take and how did you do it?
Jim
