Hi all,
Wanted you to know that I am no longer working. MS got the better of me
after a long and tough battle. I just can't do it anymore; the pain,
fatigue, cognitive issues and quality of life won over. They made me say, I
don't care how the bills and health insurance will get paid; I
Hi,
You're right TM sucks and has ruined a big part of my life. It has been 5
years and I am still finding more things it has ruined (thinking about
disability due to it getting harder to work full time and do anything else,
but that is a whole can of worms).
BUT it has not taken away my
Hi Janice,
You might notice familiar verbiage in here, I borrowed some from others emails,
less to type and they explained it well. I hope you all don’t mind.
In June 2008 I woke up with a hard to define, numb but not totally numb feeling
in both feet. Within 4 days it was up to my waist,
Hi Rob,
I can't wait to hear you say your pain is greatly reduced or gone.
I had my pain pump (same pump) put in on June 5th. I was uncomfortable for
about 3 days, then the surgical areas felt so much better. You can't do
much but hang out, I organized all my screws, bolts, nuts, etc.
Hi Rob,
From what I hear I think you will be very happy. The difference between the
amount of baclofen needed through the pump and taken orally is a lot. If
you are currently taking Baclofen it most likely makes you groggy, the pump
should change that.
Not that I'm a doctor, but I agree
[mailto:jannic...@gmail.com]
Sent: Monday, June 10, 2013 10:59 AM
To: Deb Monteleone; TMIC
Subject: Re: [TMIC] Deb's Pain Pump Surgery Results
Deb,
This sounds a little like my implant covering nerve pain with sensations rather
than meds. But, it also sounds like I had less pain than you do
Hi All,
Jude, I hope your pain pump quest is going well. Here are the results of my
pump implant surgery on Wednesday 6/5 (5yrs to day of 1st TM symptom)
The surgery went well. It was a long day; got to hospital at 9:00 am,
surgery from 12:00 to about 1:30, then onto recovery and finally
Hi Janice,
Sorry to hear about your fall. Hope you heal quickly. I can give you some
information on vertigo, at least the kind I had a few weeks ago.
Yes with all I’ve been going through with pain and testing for the pain pump a
little vertigo got thrown in. Ah life is such a joy.
I
Hi Jude,
Sorry took so long to reply. I have not read my emails for 2 ½ weeks or so.
I went for three trials by having the medicine injected into my spinal fluid
before actually implanting the pump. I am going this Thursday to meet with
the surgeon.
First trial was Prialt (snail
Hi Jude,
It's funny, I actually just went to the Doctor at the Pain Management Center
yesterday morning. Then your email came later that night. I thought I
would share with the group, maybe someone else is also looking for
information or just looking for something to read to pass the time
Hey Rob,
I don't need the baclofen pump but I have an appointment in two weeks to
discuss a morphine pump. My Neurologist has patients using the baclofen
pump with great success. I heard him say to one of the PA's that if a
particular patient doesn't have the pump put in they will end up not
Janice,
Sorry if you wrote about your nerve implant already but I can't bring it to
mind. Seems to happen a lot to me. What does it do for you?
When I went to one pain mgmt. doctor I was told about spinal stimulation
(implant) but they said it would not help my peripheral neuropathy
Hi Jude,
Glad you are asking about the pain pump (not baclofen pump, spasticity).
The one I heard about has morphine. I am actually going this Monday for a
consultation at my neurologists pain management center, the pump will
definitely be discussed.
I have had TM/MS for 4.5 years and
I was having trouble reading, drifting and falling asleep. I realized it
was the print size and the contrast between the paper and the ink, they just
blurred together making it impossible to comprehend anything.
I bought a Kindle and what a difference, I could read for 1-2 hours without
Hi Kim,
I hear you. I live on Long Island, NY so the winters are better than the
northern states. I have not worn socks for over 4 years, don't know how
many I tried. I have to wear shoes for work. Only ones I can tolerate for
short periods of time are the Easy Spirit Traveltime shoes.
I just had Shingles this last Labor Day. Noticed raised bumps on my
stomach, left of the midline, around to the spine. PA didn't mention
shingles, next day, Saturday went to the emergency room as my husband and I
thought it was shingles and know the importance of getting the medication
early.
I see my neurologist every 3 -4 months, as that is a requirement when
receiving Tysabri infusions for MS. Blood work is done every 3 months and
Brain MRI every 6 months, all these are requirements for Tysabri. It is a
monthly infusion that can possibly cause a deadly brain infection, hence all
Hi Bernie,
Thanks for the info. I don't see hardly any emails on TMIC, do you know if
people are now sending them to individuals (groups) instead of the TMIC
address?
Make it a great day,
Deb
From: Bernie Pelow [mailto:bpe...@austin.rr.com]
Sent: Saturday, January 12, 2013 11:36 AM
Hey Dalton,
When I first went back to work under all the medications it was horrible.
Was falling asleep driving, had to pay 150% to any and all tasks and after
about two sentences talking with someone I would fade out. Thought I would
not be able to work.
My support group mentioned
Hi Dalton,
I am fortunate to still be working to keep my mind busy and have some social
life. We have 2 things in common; I'm in the baby beginnings of attempting
a book and I also love working with wood. Before TM I made lots of
furniture for the house. I then became interested in the
know how you are doing.
Janice
From: mailto:aiki...@optonline.net Deb Monteleone
Sent: Friday, May 18, 2012 5:27 PM
To: mailto:jan...@centurytel.net 'Janice Nichols' ;
mailto:tmic-list@eskimo.com tmic-list@eskimo.com ;
mailto:robthe...@aol.com 'Robert Pall'
Subject: RE: [TMIC
Hi,
I loved your sentence on shoes. I have done the same thing, able to return a
lot, thank god. It’s even worse with socks, I think I tried every kind of
sock, finally gave up, haven’t worn socks for 3 years. Just recently I tried a
pair of good silk socks, depending on the day I can
Hi all,
I don't write much, but I did recently write about the pain and spasticity.
For 18 years I practiced an art called Aikido before TM/MS hit me 3 years
ago. I have always believed that is what helped me walk again, with cane
and balance issues. I wanted to get back on the mat
Jim,
That is great. Kind of makes you giddy doesn't it.
Make it a great day,
Deb
From: James Berg [mailto:molokai...@gmail.com]
Sent: Saturday, June 11, 2011 4:07 PM
To: malugss...@gmail.com
Cc: transverse myelitis
Subject: [TMIC] Lyrica
Dalton--thank you so much for steering me
Hi John,
I have same thing, I also thought feeling pain in both legs and feet meant I
was getting better. It’s been around 2 years now and the pain is still there
and unbearable at times, even with all the medications. I am never comfortable
except when I first wake up and stay still, if
Hi Ruben,
Not sure how your upper body is, but I installed hand controls in my car. It
was a wonderful feeling to know I can get up and go. Although the go part is
still not so great, not too many places to go. I still work so it gets me
there and I got a scooter to put in it. Compared to
Deb - Long Island, NY (suffolk county)
Hi, my name is Deb.
I am glad some of you are giving the history of your experience with TM. I
am fairly new to it and I am still trying to deal with it and figure things
out. I have been part of this group since about August 2008 but have not
participated much. I am still hopeful of
: jrushton
To: Deb Monteleone ; tmic
Sent: Thursday, August 14, 2008 7:33 PM
Subject: Re: [TMIC] A question from a new member
I got your message, Gene, and welcome to both you and your wife. You
are in good 'hands' here with a whole lot of new friends and people that can
give you
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