If you look at the membership directory there are probably at least 100 people
in most states. No one seems to have more than the others at a glance, but
have to admit I didn't take the time to sit and count them all.
From: Janice Nichols
To: I.WHIDDETT
C
Yes paying for each refill is standard. They actually charge for in office
surgery each time they access it to refill it. We have a private insurance
through my husbands work and our co-pay is 20% each time.
From: "heyjude48...@aol.com"
To: lynnemye...@yah
I have to get it filled every 6 months. It was every three at first, but once
my dose was stable they used a stronger concentration of Baclofen and moved it
out.
From: amy shultz
To: lynnemye...@yahoo.com; TM group
Sent: Saturday, February 23, 2013 9:22 PM
Rob I have had a pump for quite a few years now, I use it to control clonus in
my legs. The only down side I have found is the cost involved with getting the
pump filled. Even with insurance my co-pay is over $600 every time I have to
go in.
From: Robert
Janet I think I am one of the odd ones out there who has more problems with the
heat than I do with the cold weather. I always seem to have more issues with
spasms and pain during the summer months, especially if we are having hot days
with high humidity.
Lynne
--- On Mon, 6/25/12, Janet Dunn
Sorry I didn't respond sooner. I have had my pump for a few years now. It
works very well to control the spasms without the "brain fog" I got from taking
the baclofen orally. At this point it is regulated well enough that I only
have to get it filled twice a year because they were able to u
--- On Sat, 10/29/11, Joy Williams wrote:
From: Joy Williams
Subject: specialized handicap wheelchair and bicycles?
To: "lynnemye...@yahoo.com"
Date: Saturday, October 29, 2011, 10:27 PM
Hi. I guess I am a member of TMA, at least I get the newletter. I do try
to read it ,but to be hon
I have gotten shingles three times in the last few years, and to say the least
it is miserable. But on the recommendation of many doctors over the years I do
not get any vaccines. My TM was also idiopathic and the reason I was given was
because they do not know what caused my TM I should not t
Not sure about your area but where I live our local high school has a
commuinity service requirement for the kids to graduate. That may be another
place to check for help with no cost involved.
Lynne
--- On Sat, 10/8/11, Janice Nichols wrote:
From: Janice Nichols
Subject: Re: [TMIC] Pyrrhic
Dalton,
Very sorry to hear about your loss. It makes this disease even harder to deal
with when it takes something away from you that you love. It has been almost 8
years for me since I had to quit nursing, and I still miss it every day. I
hope you are able to find comfort in your writtings
Congrats to all, our first grand son is on his way. Due May 27th.
--- On Wed, 1/12/11, j.d...@shaw.ca wrote:
From: j.d...@shaw.ca
Subject: Re: [TMIC] OT-New Granddaughter
To: "Butcher, Bernie (S&FS)" , "Cody"
, "TMIC"
Date: Wednesday, January 12, 2011, 1:29 AM
Congratulations to all
Kevin,
I know first hand after years of working in nursing homes, first as a nurses
aide then as an RN that falls are the biggest issue they all have. It is not
that they don't care if people fall and get hurt, but with state regulations,
atleast here in Michigan, it is very difficult to preven
I am currently taking 5 units of vitamin D weekly for a six week period.
Not because of any kidney disease, but because when my levels were checked they
were almost undetectable. They have dropped this low a few times in the years
I have had TM.
Sally when talking about vitamin D doses a
I also take Tegretol, it helps me the most with my banding. Was suprised with
the amount of relief I got within a short time after starting it.
Lynne
--- On Wed, 12/8/10, Bernie wrote:
From: Bernie
Subject: Re: [TMIC] question
To: "Dalton Garis" , "TMIC"
Date: Wednesday, December 8, 2010, 4
My physicians have told me since the begining of my TM not to get any
vaccines. They are all afraid it will put my immune system into over drive
again and cause a flare up or possible recurrance. So none for me, even though
I have had shingles twice since getting TM and they are definately no
Make sure you are registered on the TMIC website. That will give them the
information they need when they do the update.
--- On Fri, 10/1/10, Emily wrote:
From: Emily
Subject: RE: [TMIC] Anyone else in Hawaii
To: "'Patricia Cooley'" , kimharrison...@comcast.net,
tmic-list@eskimo.com
Cc: tmic
Annual Michigan TM Support Group Meeting will be held on Saturday October 9th
at 1pm at the World Buffet on Saginaw Hwy. in Lansing. This location is
centrally located for most of our members. If you are interested in attending
please let me know by October 1st.
Thanks,
Lynne
269-420-4144
wrote:
From: Akua
Subject: Re: [TMIC] pause from the cause
To: "lynne myers"
Date: Tuesday, August 10, 2010, 5:58 PM
Re: [TMIC] pause from the
causeHave you tried naltrexone low dose naltrexone helps me a
lot!
I gave up pain meds while in the hospital because days
disappeared
an
The MagCitrate is also great for digestion.
--- On Wed, 8/11/10, randy rankin wrote:
From: randy rankin
Subject: Re: [TMIC] arghhh!!!
To: "Janet Dunn" , "john snodgrass" ,
"transverse myelitis"
Date: Wednesday, August 11, 2010, 11:37 AM
Baclofen was a big turning point for me - didn't kn
Cheryl,
I understand what you are saying about the pain. I am also unable to take any
pain medication, so have just been trying to learn to live with it, which is
more successful some days than others.
Lynne
--- On Sat, 8/7/10, Janice Nichols wrote:
From: Janice Nichols
Subject: Re: [TMIC] p
Found most of the uses interesting, but as a nurse I have to tell you I would
no sooner use peroxide on a wound than bleach. Peroxide can cause damage to
surrounding healthy tissues and actually slow healing. For me good old soap
and water work the best.
--- On Tue, 7/27/10, Janice Nichols
I was on the max dosage of oral Baclofen before the pump and was not getting
relief from the spasms, just felt like a had major brain fog all the time.
--- On Wed, 5/19/10, Janice Nichols wrote:
From: Janice Nichols
Subject: Re: [TMIC] baclofen pump
To: "lynne myers" , "
I have lived in Michigan all my life. Have lived in fairly small towns the
entire time although there were two factorys within a few blocks of where I
grew up.
Lynne
--- On Wed, 5/19/10, kimr1999 wrote:
From: kimr1999
Subject: Re: [TMIC] Where TM struck
To: jan...@centurytel.net, tmic-list
I have had a Baclofen pump for a 3 years now. Although it does relieve some of
my spasms and clonus they are not able to turn the dose up high enough to get
the desired relief with out affecting my bladder function. I wish before I had
it inserted I had checked to see what it was going to cos
Yes I will probably get them again, I have a course of Valtrex on hand at all
times so I can start to treat them as soon as they pop up and don't have to
wait to get into the doctor first.
Lynne
--- On Sun, 3/14/10, Janice Nichols wrote:
The way I understand it autoimmune disorders are caused when your immune system
responds to a virus but ends up attacking healthy body tissues as well.
--- On Sun, 3/14/10, Laura Beaudin wrote:
From: Laura Beaudin
Subject: Re: [TMIC] shingles
To: "lynne myers"
Cc: "tmic
I have had Shingles twice since TM onset. Mine were only slightly painful and
very itchy. My physicians will not give me the shingles vaccine, or any other
vaccine for that matter.
They fear it may make my immune system over react again.
Lynne
--- On Sat, 3/13/10, bobby jim wrote:
From: b
So Sorry I did mean now not not.
--- On Thu, 3/11/10, Pieter and Heather wrote:
From: Pieter and Heather
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: "lynne myers" , "tmic"
Date: Thursday, March 11, 2010, 4:31 PM
Lynne,
I think you meant to write that Jim Lu
Lubin is actually
not able to move a finger after being paralized for years.
--- On Wed, 3/10/10, Janice Nichols wrote:
From: Janice Nichols
Subject: Re: [TMIC] Lesions and Myelin Regeneration
To: "Robert Pall" , "Jan Hargrove"
, "lynne myers" , "tmic"
This is a quote from one of the message forum pages on TM website:
Even though the lesion(s) are gone, there may be underlying nerve damage caused
by the inflammation and the fact that the nerves were "unprotected" once the
myelin got "eaten" away. The myelin grows back at 1mm a day, so it take
Actually what happens is that the inflammation subsides, and the myelin
eventually regrows, but the resulting nerve damage remains under the new
myelin. Some recovery is possible as the myelin regenerates and covers nerves
which are irrated but not damaged hence the two year window that we all
I had the same problem a couple of months ago with yahoo. It was right about
the time I started using facebook and I was told there were alot of issues with
facebook at the time because of someone getting into the system that contains
their passwords. I changed my passwords on the email and o
--- On Sun, 2/14/10, lynne myers wrote:
From: lynne myers
Subject: Re: [TMIC] TM and Pilates
To: rj_ran...@yahoo.com
Date: Sunday, February 14, 2010, 8:16 AM
I think what your neuro was telling you was that TM is part of a group of
diesases that are autoimmune disorders. These
Three types of weather are bad for me. Cold rainy weather is the worst, even
the day before the rain starts. Hot humid days are next on my list. Then the
cold. So in Michigan that leaves me a couple of months out of the year that
aren't any of the above. Heather I agree about the changes in
I was 42
--- On Fri, 12/11/09, Janice Nichols wrote:
From: Janice Nichols
Subject: [TMIC] Age
To: tmic-list@eskimo.com
Date: Friday, December 11, 2009, 12:35 AM
Hey!
I have a request. I was talking to my neuro and he was curious to know the
ages
that my website friends were when they w
Myelin does grow back, its the nerves under the myelin than don't grow back.
Lynne
--- On Mon, 11/16/09, Janice Nichols wrote:
From: Janice Nichols
Subject: Re: [TMIC] Topamax
To: tmic-list@eskimo.com, "Laurie Zissimos"
Date: Monday, November 16, 2009, 11:20 PM
Laurie,
I was told, repeated
My physician has told me not to get any vaccines. Because TM is caused by the
immune system over reacting there is a chance that any thing that activates
your immune system can cause it to over react again.
Lynne
--- On Sat, 10/31/09, C E wrote:
From: C E
Subject: [TMIC] Swine Flu
To: tmic-
Our local high school also requires seniors to complete so many hours of
community service prior to graduation so that may be another place to check. A
few years ago my mom got paid for going in and helping out a friend who was
sick. The friend was very low income and the payment came through
I believe she is talking about muscle tone. Constant high tone in the muscles,
which is sometimes refered to as clonus.
Lynne
--- On Fri, 10/9/09, fr...@franksheldon.com wrote:
From: fr...@franksheldon.com
Subject: Re: [TMIC] Neurontin
To: balmat...@aol.com, alle...@aol.com, tmic-list@eskimo.
family member
or friend with you. It is a great time to share information and meet others
who understand what you are going through.
If you are planning to attend please contact me and let me know by Halloween.
Thank You,
Lynne Myers
information and meet others
who understand what you are going through.
If you are planning to attend please contact me and let me know by Halloween.
Thank You,
Lynne Myers
Lynne Myers Olivet MI Michigan Support Group Leader
--- On Tue, 9/15/09, L T CHERPESKI wrote:
From: L T CHERPESKI
Subject: Re: [TMIC] Looking for TMr's for support groups
To: "'Butcher, Bernie (S&FS)'" , "'Robert Pall'"
, "
It is a cream. I have used this for about 4 years and it helps quite a bit. I
use it mainly on my right hip and hands.
Lynne
--- On Mon, 8/24/09, Janice wrote:
From: Janice
Subject: [TMIC] Arthritis
To: tmic-l...@eskimo.net
Date: Monday, August 24, 2009, 3:54 PM
Has anyone tried the "Au
I get mine at our local drug store, but they also have a website.
www.australiandream.com/
--- On Tue, 8/18/09, L T CHERPESKI wrote:
From: L T CHERPESKI
Subject: Re: [TMIC] Linda Needs Some Help
To: "tmic" , "lynne myers"
Date: Tuesday, August 18, 2009, 12:06 AM
The glucosamine never did much for me either, but my husband swears by it. A
few years ago I found a cream called Australian Dream. Its made out of emu oil
and it really helps with the arthritis in my hands. I use it a couple of times
a day.
Lynne
--- On Sun, 8/16/09, L T CHERPESKI wrote:
Have you looked on ebay for chairs. I got my mom a nice one on there for about
$300 about a year ago.
--- On Thu, 8/13/09, Kevin Wolfthal wrote:
From: Kevin Wolfthal
Subject: Re: [TMIC] Wheelchair questions
To: tmic-list@eskimo.com
Date: Thursday, August 13, 2009, 9:53 PM
Thanks to every
I take tegretol 200 mg. twice a day and it helps with the banding. Only have
it occasionally now and thats only if I have really over done it.
Lynne
--- On Wed, 8/12/09, rn11...@yahoo.com wrote:
From: rn11...@yahoo.com
Subject: Re: [TMIC] That banding feeling
To: "Janice"
Cc: tmic-list@esk
I have been on Medicare for about 6 years now and it is also my secondary.
Because my husband still works and we have insurance through there that is
considered our primary. At this point I only have part A coverage which has
paid for nothing. Part B would not be paying anything now if I did
have always been worse at night or
when I try to lay down to relax.
Lynne
--- On Sun, 7/19/09, Janice wrote:
From: Janice
Subject: Re: [TMIC] Medications
To: "lynne myers" , "tmic"
Date: Sunday, July 19, 2009, 11:31 PM
What are your spasms like? Are they mostly a
I am also considering having my pump removed but not because I am having any
problems with it, just because of the cost of maintaining and getting it
filled. Even with health insurance my co-pays and my 20% end up costing me
well over $400 every three months when I get it filled. That and havi
Naomi,
If you have a choice of neurosurgeons at U of M I highly recommend Dr. Sager.
He did my pump surgery.
Lynne
--- On Fri, 7/17/09, ladyno...@aol.com wrote:
From: ladyno...@aol.com
Subject: Re: [TMIC] Medications
To: fr...@franksheldon.com, tmic-list@eskimo.com
Date: Friday, July 17, 200
bject: Re: [TMIC] Medications
To: "lynne myers" , " Bernie (S&FS)Butcher"
, "tmic"
Date: Thursday, July 16, 2009, 11:45 PM
Is the Baclofen pump you are using for pain or spasms, etc.? Also, where
is it inserted? Janice
Rob,
I have been taking Tegretol for a couple of years now for the banding and it is
working great. I still have some banding there but not nearlly as bad as it
used to be. It doesnt take my breath away when it happens and I can continue
to function thur episodes now.
I tried the Lamictal, b
Barney,
I have had a baclofen pump in for a couple of years now. Just wish the results
I was getting now were half as good as what I got from the trial. But when my
dosage is adjusted high enough to get those results I have increased bladder
issues and weakness.
Hoping things work out better f
A great way to strengthen your core is to get one of the large exercise balls
and if you are able to just sit on it for an hour or so each day. I can only
do about 15 minutes at a time, but it seems to help with my back spasms too.
--- On Fri, 7/3/09, Kevin Wolfthal wrote:
From: Kevin Wolfth
Janice,
I got TM shortly before my 25 year class reunion and did not attend that one.
Not so much out of vanity but because at the time I didnt think I would be
able to handle being out and about for that length of time.
My 30 year is coming up the end of this month. I wont be able to atten
For those of you who dont get Readers Digest there is a short article in there
about Cody Unser, a 22 year old who was 12 when she got TM. The article is
titled Best Plunge and is on page 81 of Julys Readers Digest. PBS is going to
be airing a documentary about her in July. Documentary is called
Debi,
Antidepressants like elevil, cymbalta, desyrel and others are often prescribed
for pain relieving properties so they were not lying to you when they gave it
to you. These often have great results.
Lynne
--- On Fri, 6/19/09, bradebi wrote:
From: bradebi
Subject: Re: [TMIC] AntiDepress
I got mine on e-bay. There are usually alot of them listed there with buy it
now prices.
--- On Wed, 6/17/09, bradebi wrote:
From: bradebi
Subject: Re: [TMIC]
To: kimr1...@bellsouth.net, "tmic-list" , "lynne myers"
Date: Wednesday, June 17, 2009, 8:44 P
I sleep with a Chillow at night and it helps a great deal. It is a gel filled
pad for your pillow and now I dont have to keep changing pillows all night to
find a cooler feeling one.
Lynne
--- On Tue, 6/16/09, kimr1...@bellsouth.net wrote:
From: kimr1...@bellsouth.net
Subject: Re: [TMIC]
To
For me the only issues I have with winter is an increase in pain, the heat
makes my spasms much worse than cold. I have never lived any where other than
snowy Michigan so I think coping with the ice and snow have just become
normal. I just wear rubber soled tennis shoes and keep going. As lo
Before TM I was working as the Assistant Director of Nursing in a nursing
home. I loved my job and the people I worked with. It took me years to get to
the position I wanted and was only able to actually do the job for about 7
months before TM struck in June of 2003. I have not worked since t
You can add me to the June list on the 24th.
Lynne
There is another option you may want to check into, I know there is a company
out there that does vitamin D in a liquid form that you rub on your chest
every day.
--- On Thu, 5/28/09, CANDIS KALLEY wrote:
From: CANDIS KALLEY
Subject: Re: [TMIC] Steroids and Osteoporosis
To: "tmic-list"
D
Most of the strength returned in my legs. I just have some residual weakness
on my right side. I walk around the house and the yard fine without any
assistive devices, only use cane when I go out because I do fall frequently,
and use electric carts in stores when I will be shopping for more th
I don't know about anyone else but I have had problems with over heating since
TM hit. Seems like I am constantly putting on and taking off clothes. Don't
remember the last time I was able to crawl into bed and snuggle down under the
covers without having to throw them off a couple of minutes
I have had my baclofen pump for about a year and a half now. I dont think it
works any better at controling the spasms than the oral baclofen does, but I
dont have the brain fog as bad as I did when taking the pills. The main
problem I have with the pump is the cost. My insurance cover
Frank,
They were never able to locate a lesion on my spine and from what I have read
on the message forums this is true for alot of people.
I had mutiple MRIs done both with and without contrast.
Lynne
--- On Sun, 11/23/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote:
> From: [EMAIL PROTECTE
Just wondering if anyone knows why the like to respond to postings no longer
shows up on emails? It sure made it alot easier for me to reply than having to
log on to site to do it.
One of the recent postings really hit home with me. It mentioned being labled
a hypocondriac. I spent over a y
Thanks to all of you who replied to me. Sorry I didnt type more information in
introduction, was a long weekend for me and need a few days to recover.
I live in Southern Michigan.
Lynne
At Patti's suggestion at yesterdays support group meeting I decided to join
tmic.
My name is Lynne and I have had TM for 4 years now. I am able to walk with a
cane now, after spending almost a year in a wheel chair.
Prior to TM i worked as a registered nurse.
I am married and have two sons ages
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