Janice...I believe my body has gotten so used to these meds..that Dr.
Kerr felt it would be good to try a change.The new drugs he may try
after I have weaned myself off the Lyrica are Lamictal or Tegretol (for
the banding) and Provigil (for fatigue)I would love to hear from
other members who
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,
The pump is for the spasms. It works the same as oral Baclofen but uses much
less medication to get the same results.
The actual pump is inserted just above and to the left side of my belly button.
Then the tubing runs from there around my left side and into the lower part of
my spinal
Hi Lynne - my neuro prescribed 60mg/day of of baclofen pills (working up
in increments from 10mg), but when I got to 20mg, I became like a rag
doll. I couldn't sit up without tilting over, and when I got tired (like
at 5pm every day), I could hardly stand up (with walker of course). She
said with
Hi Rob - I took provigil but it only worked sometimes. Now I take
Ritalin
BERNARD BUTCHER
From: Robert Pall [mailto:rp...@neillsupply.com]
Sent: Friday, July 17, 2009 7:39 AM
To: Janice; Tmic-list@eskimo.com
Subject: RE: [TMIC] Medications
Janice...I
As you all are contemplating your Baclofen doses or trial, I am waiting
for the neurosurgeon to remove my Baclofen pump.
I had my pump put in July 2006. Initially the pump worked well for
preventing spasms, but I did not know that it would prevent me from standing
or
walking, because I
Hi Naomi - please keep me informed, they want to put one in me if trial
works
BERNARD BUTCHER
From: ladyno...@aol.com [mailto:ladyno...@aol.com]
Sent: Friday, July 17, 2009 12:49 PM
To: Butcher, Bernie (SFS); tmic-list@eskimo.com
Subject: Re: [TMIC]
Did I read correctly?
Is it possible Dr. Kerr will prescribe Rob medication for constant fatigue?
and that it may work?
If it does, I'd jump for joy if I could do it without falling.
I've accepted getting up in the morning just as exhausted as I was when I went
to bed for too many years.
*Hi Regina, *
**
*I use Amantadine for severe fatigue. It's an anti viral that is also used
for Parkinsons patients and neurological fatigue. It works like a charm and
is so much cheaper than Provigil. *
**
*Gracie*
I tried once to have the pump removed but was unsuccessful. They could not
get an IV in. They tried from my feet to my exterior Jugular. Once I get
over this bladder infection, they will try again. Wish me luck.
Naomi,
Your story is very familiar. I know dozens of people who have had
Frank, what do you think? What do you do for fatigue?
R,
I take 100 mg of Privigil before breakfast. It helps, but I still have a nap
at 2 PM, but sleep at night like a baby
F
Everyone I tell about them not being able to get an IV in, just cannot
believe it. My sister, who is a nurse, said I need to go to a different
hospital. I am in the process of having my primary care physician set me up
with
a neurosurgeon at University of Michigan Hospital. I sure hope so,
Hey Randy,
You talked about chest pains.
You may need to see a chiropractic for a pinched nerve.
When I was 5, I failed from the top of a slide to the ground head first. It
wasn't until I was 15 that I was having 3 mild 1 that put me to my knees
chest pain a day. All the doctors would say
Oh, God (and I mean that), I couldn't agree more. The only way I would
feel okay with that is if Dr. Kerr agreed with them.
---Original Message---
From: roseofr...@aol.com
Date: 7/17/2009 2:18:36 PM
To: jrush...@columbiaenergyllc.com
Subject: Re: [TMIC] New onset of TM - little
I sent the attached to Robert but FYI -
- Forwarded Message -
From: CANDIS KALLEY cakal...@embarqmail.com
To: Robert Pall rp...@neillsupply.com
Sent: Friday, July 17, 2009 7:58:36 AM GMT -05:00 US/Canada Eastern
Subject: Re: [TMIC] Medications
I have tried the Provigil with
*It depends on the underlying cause of her TM. If it is something like NMO
(As in my case.) then immunosuppression via chemo would be something that a
neuro would definitely consider. If it is idiopathic---then, no.*
**
*Respectfully, *
*Grace* *(NMO since 2005)*
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 ladyno...@aol.com wrote:
From: ladyno...@aol.com ladyno...@aol.com
Subject: Re: [TMIC] Medications
To: fr...@franksheldon.com,
Jeanne, first of all Colby is of course in my prayers. I just can't believe
she is from Dayton, your intimate little town. My goodness - so rare.
Ok you're upset that the doctors want to put her on chemo. I have been on
chemo since the beginning of TM 7 years ago. The reason for this is
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
Hi Naomi,
You are in my prayers. I can see why your body would see the pump as a foreign
object and naturally want to reject it. So, may you heal quickly from this
bladder infection so the doctor is able to get that pump removed safely.
Looking forward to hearing that you are feeling so
I learned to aggressively quiz anyone who approached me for blood. I
required the phlebotomist.
I remember being told once there was none and it would cost more. I
also remember telling someone they had one stick and no more. I
was already in the most wretched pain from TM and paralyzed,
but
Just a note to give you an update on the little girl. Instead of 8 years
old, she is 13! Gosh, the last time I saw her she was such a little thing.
I would see her almost every school morning walking to school but I forget
that I've not worked and have had TM for over 4 years!!!
Anyway, the
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