I take 10mg of prednisone and 175 mg of azathioprine (Immuran) daily. I have
sarcoidosis and tm. I have been on azathioprine for 4 years and haven't
noticed any difference with my hair or nails.
Lynn ( in rainy RI )
- Original Message -
From: Patricia Cooley
To: 'L T CHERPESKI'
I have been doing the wii fit since Christmas. My daughter gave it to me.
There are fun games and exersices to do at your own pace. I also do eliptical.
Good for me because I don't have to lift my feet up. on the tread mill or
walking outside I am afraid I will trip and fall.
Lynn ( in sno
That is kind of funny because I actually have sacoidosis and that is what
caused the tm. It was found by accident on an mri I was having. They noticed
enlarged lymphnodes around my lungs and did a biopsy and found sarcoidosis. I
have recurrences four times and I am finally on immunotherapy.
I was 37. It took about 3 days to become totally paralyzed. Started with back
pain and tingling from my feet up. Then the weakness set in.
Lynn in RI
- Original Message -
From: Krissy Z
To: Bob and Sue Mattis
Cc: TM List
Sent: Friday, June 06, 2008 8:50 AM
Subject: RE:
It was amantadine. A medication that helps to lessen flu symptoms if taken
right away. I believe it is also given to people who can't get a flu shot to
prevent the flu.
Lynn (in RI)
- Original Message -
From: Carol
To: tmic-list@eskimo.com
Sent: Tuesday, May 20, 2008 7:17 AM
I also take Lyrica 150mg bid for pain and burning and such. This replaced the
tegratol I was taking. I have taken Lyrica for about 11/2 years and find it
works much better. Prior to switching I had leg pain all the time. Now only
when very tired.
Lynn P (t-4-5) in RI
- Original Mess
Grace, it doesn't bother me at all if people write in caps or in large
letters. What ever they need to do to see the words is fine with me. I have
been on this list for about 4 years now and have gotten some good advice.
Although I don't speak up often, I am always reading the posts. And I
I just read this story in the Sunday paper this morning. It is truly a
heartwarming story.
Lynn in RI
- Original Message -
From: randy rankin
To: Peter A. Rumley ; Chris Brudi ; [EMAIL PROTECTED] ; dean kershner ; Trey
Darley ; TM Group ; victor rogers ; Joyce Sutton ; ??? ?
Hi Sal,
I don't know about you but the doctor's want to suppress my immune system. I
take immurane and prednisone. They are both immunosuppressants.
Lynn in RI
- Original Message -
From: sal r
To: tm
Sent: Wednesday, October 24, 2007 5:49 PM
Subject: [TMIC] immune system..
Hi Patti,
I hope this plan works out for you. It is great that your neuro is taking
such an interest in your pain. Some of the neuros you hear about don't seem
to care very much.
I have been taking Lyrica for about a year. It has done pretty well for me.
My legs are in much less pain than t
yes, I take ditropan and detral la and i have terrible dry mouth.
Especially at night. I have to have mints and gum available at all times.
Lynn
- Original Message -
From: "marieke dufresne" <[EMAIL PROTECTED]>
To: <[EMAIL PROTECTED]>;
Sent: Thursday, August 09, 2007 7:55 PM
Subject:
Hi Trudi,
I have been cathing since June of 2004. I would really love to not have to
cath adn go to the bathroom like a normal person. I am on 2 bladder meds.
detral la and ditrapan. Is Enablex a new med that can help with not having to
cath? I don't really have accidents much. But have t
Yes, I agree. I have on occasion run out of a prescription and the doc's
office has filled it as long as I have an appt scheduled.
- Original Message -
From: "Sandra Brassil" <[EMAIL PROTECTED]>
To: "Kevin Wolfthal" <[EMAIL PROTECTED]>;
Sent: Friday, June 15, 2007 2:08 PM
Subject: RE:
I take ditropan xl and the dr told me to stay out of the sun. That it will
affect me more than usual.
Lynn
- Original Message -
From: "Tracey L. Black" <[EMAIL PROTECTED]>
To: "Robert Pall" <[EMAIL PROTECTED]>; <[EMAIL PROTECTED]>;
Sent: Friday, June 08, 2007 10:47 AM
Subject: RE: [
Rob,
My doctor keeps saying the hot weather is bad for me, but I haven't really
noticed a big difference during hot weather.
Lynn in Rhode Island
- Original Message -
From: "Robert Pall" <[EMAIL PROTECTED]>
To: <[EMAIL PROTECTED]>;
Sent: Friday, June 08, 2007 10:29 AM
Subject: RE: [
Hi Everyone,
I am on ssdi and I have gone back to work. The government really worked with
me to help get back to work. I got a "ticket to work" in the mail with my
information about ssdi. This is kind of a safe way to go back to work. When
you call the number on the ticket they give you nam
When I got approved for ssdi I received a lum sum also with no explanation.
That showed up afterwards. They will eventually send you all the information.
No they do not automatically take taxes out. You must got the the wbsite
ssa.gov and fill out a form to have them remove taxes. Also you
Hi Louise,
Thank you for putting it so clearly. This is also the way I understood the
diagnosis of tm and then a later diagnosis of ms.
Lynn (in Rhode Island)
- Original Message -
From: Louise Croyden
To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com
Sent: Wedn
Hi Patti,
I have sacroidosis which what they think caused my tm. And yes, it is
considered an autoimmune disease. I have had several "attacks". 3 times
landing me back in the wheelchair and learning how to walk again. Luckily each
time I have been able to get up and walk in about 3 months t
IL PROTECTED]>
To: "Lynn Pouliot" <[EMAIL PROTECTED]>;
Sent: Thursday, May 10, 2007 10:33 PM
Subject: Re: [TMIC] allodynia - Lynn
Lynn,
This is one of the oddest things I've noticed with my own symptoms.
My feet are numb to the touch, I can't tell what direction my bi
I have "had" tm since 1992. I have had flare ups but do get somewhat better
each time. But I can't say I am in lots of pain. And don't notice lots of
increase in pain. Now that i am on the lyrica the pain in my legs is not
too bad. I do get feelings of cold or burning sometimes but it is no
I am taking lyrica. I have been on it about 1 year and it has helped with
pain in my legs. My legs were aching and hurting all the time before
lyrica. Now they still hurt on accasion but not all the time.
Lynn in RI
- Original Message -
From: "Gunny" <[EMAIL PROTECTED]>
To:
Sent
Hi Trudy,
I take lyrica 150mg twice a day. I haven't really had any major side
effects from it. The first week or 2 I was very sleepy and foggy but after
that I adjusted. Also, for the first few months I would get a strange
feeling in my legs. It would start up my right leg, go into my tru
first got sick?
Kristy Matheson
From: "Lynn Pouliot" <[EMAIL PROTECTED]>
Date: 2007/04/18 Wed PM 04:54:31 EDT
To:
Subject: Re: [TMIC] straight cath
Mark,
I cath 5 or 6 or sometimes more depending on how much I drink. I am
hoping to be able to go off all my bladder meds and u
Mark,
I cath 5 or 6 or sometimes more depending on how much I drink. I am hoping to
be able to go off all my bladder meds and urinate on my own. I have been
cathing for about 3 years. I have cut down on my bladder meds and I am now
only taking 1. I can urinate on my own a little. But I don
Hi Cora,
That sounds great! But what is it that you have had done? I guess I missed
those emails. Right now I have to straight cath to go pee. I don't have
that much leakage but I am on 2 bladder meds also.
Lynn, in RI where it is a beautiful spring Saturday
- Original Message -
I don't usually write in to the list but read all the emails. This was sent
to me by a reliable source. If you click on the link you will see it is
legitimate and important to all women. Please sign the petition!
Thanks,
Lynn P, in RI
Click on url at the bottom to sign petition.
I have been on coricosteroids
for a long time. Right now I am on 10mg every day. That is a fairly
low dose. But I have been on much higher doses over the years and did a
year of monthly iv steroids which is 1000mg. My doctor has me go for a
bone density test every year and so far everyt
I get the banding around my chest and middle.
It just feels really tight, I guess banding is a good word because it does feel
like a tight band around my middle. But I only get it when I am
tired. Like at the end of the day.
Lynn in RI rainy again
- Original Message -
From:
Yes, I have been given 1000mg prednisone IV for 5 days
each time I have had a flare up. onece nin 1997, again in 2004, and again
in 2005. I don't think it made me feel worse though. I do question
whether it helped or not each time it took months to recover and after this last
one I have n
Hi Jill,
I think those feeling are very common among people
with tm. I was taking tegratol for those burning, tingling feelings.
Now I am taking lyrica. I have never had any tingling in my head
though. my leseion is at t4-5. It is a very scary thing, waiting to
see if it will ever co
I was taking baclofen 20mg twie a day. I recently went down to 10mg
twice a day. Now I notice my calf are very tight when I wake up in the
morning. But so far the spasms have not increased.
Lynn P in RI
- Original Message -
From:
[EMAIL PROTECTED]
To: [EMAIL PROTECTE
My birthday is 8/30/60, Lynn
Pouliot
I Have been taking Lyrica for about 1 month. I definately noticed that it
increased my dry mouth. I already had dry mouth from the bladder meds that
I am taking, but now my mouth is like the sahara desert. Sometimes it is so
dry I can't swallow and now my sinuses are dried out too. I started
I know that with my diagnosis of TM the mri showed
a clear lesion in the t4-5 area of the spinal cord. My first mri was in
1993. Since then I have had 5 flare ups and now have a diagnosis of
recurrent TM. Each mri shows that same lesion and inflammation in the
spinal cord. Although ther
Hi Sally,
I have recently started on Lyrica and I feel
much better. I was on tegratol for the banding in my torso and also for
the pins and needles feeling and funny feelings in my legs and feet. I
tried it because I was having so much pain in my legs it was getting hard
to function. N
Yes, I received one last year. This was I
beleive was the TMA directory. I received the TMA journal last week.
I read the whole thing. It really helps me to feel less alone with this
thing and it seems like lots of new research going on that will eventually
help everyone.
Lynn in RI
The cold never bothered me this much before. Now I have flannel
sheets on the bed but have to wrap myself up in a fleece blandet like a mummy
under the sheets and often have to put one ot those heat packs on my feet!
I can't wait for spring.
Lynn in RI
- Original Message -
F
I used something very similar at
physical therapy. I was in the wheelchair and not weight bearing.
The therapist said it was to help with osteoporosis. You sit in it and
they crank it until it is in a standing position. There are big plate like
things on your chest and back and your legs
Hi Everyone,
I too get up feeling like I can do anything.
I always start some sort of project ( cleaning house, clearing out a closet,
decorating) and soon realize I "bit off more than I can chew" I tire so
easily. Hence, I always have half of things completed. And a bigger
mess than I
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