Re: baclufen pump/loss of reflexes

[Guest guest]

Renea

Check the SPF website for the current Baclofen pump survey.

http://sp-foundation.org/forum-pump-survey.htm

Also check out the website about the NY Connection on May 1

that is centered on this very topic.

http://sp-foundation.org/calendar.htm

May 1, New York Conference in Tarrytown (near NYC) featuring Dr.

Krakauer, professor of neurology at Columbia University and Dr. ,

neurologist at the Multiple Sclerosis Care Center of Westchester on treatment of

spasticity

Gentner

Alone we can do so little. Together we can do so much.

Helen Keller (1880-1968)

[Guest guest]

Renea, I'm thinking about the pump. Keep me posted on how things

go. I'm currently taking Bacoflen pills. I'm getting alot of leg

cramps when I wake up in the morning. Had you been on the pills

prior to getting the pump? I hope all works out for you. I thought I

was one of the youngest (age 46) with PLS. You are very young. When

did you start having symptons? God Bless. Sara

> Hi, I have been in the group before, but I had a bad spell for a

few

> months and have lost track of the new information. I had a

baclufen

> pump inserted Nov 03, I have had a few problems but nothing major.

I

> went to Vanderbilt in Nashville to see the doctor who diagnosed me

on

> April1,2004 and he said I had lost all reflexes in my hands, arm

and

> face. I was just wandering if anyone else has the pump and would

be

> willing to talk to me about a few different subjects. I have

started

> having panic attacks and alot more weakness and I am getting

scared!

> I am a 31 year old married female with a 12 year old son. I would

> appreciate any help or advice. Thank you Renea VAnderpool BG KY

[Guest guest]

Renea,

Hi, I'm Thomson, 50 yrs young, from Solana Beach, Ca. I've

had a pump since June 2000. When they were testing me for the pump,

my doc used my hyper reflexes as a test to see if I had a positive

reaction to the baclofen. I had a measurable difference in reflexes

before and after the baclofen bolus.

Right now my pump is filled with saline and I've noticed my reflexes

are much worse without the baclofen.

So maybe your baclofen dose is too high. It causes weakness when

you get too much.

Please give me a call, or email me. I'd be happy to talk to you

about this.

Thomson

jthomson@...

[Guest guest]

Hi Renea!

I just visited my neuro yesterday and the pump was brought up by my

wife. I vetoed immediately, but before I had a chance to explain, he

told us I would not be a good candidate for it because of my tendency to

fall. (A tendency that has greatly reduced in the past 12 months, thank

you, God.) Falling seems to jar the line from the pump to the spinal

cord loose and can cause MAJOR problems. He also told me that the

baclofen I'm on has reduced my reflexes so I don't really show much, if

at all. Yesterday, he got more reflex from my left leg than he has

gotten in some time, now. Nothing from right leg, ankles or arms. I was

surprised at the left jumping slightly when he tapped my knee. It did

the last time I saw him about 4 months ago, but just slightly. This one

was more noticeable. Also, too much baclofen can make you weak. Your

legs will feel sort of rubbery and you may not be able to do much

without getting tired. You may need to have your dosage reduced.

Now, the panic attacks are another matter. What is going on in your

thinking just before you begin feeling the beginnings of a panic attack?

Please answer me personally on this one at magray@....

Good luck,

A. Gray, M.S., LMHC

rdvanderpool2002 wrote:

>Hi, I have been in the group before, but I had a bad spell for a few

>months and have lost track of the new information. I had a baclufen

>pump inserted Nov 03, I have had a few problems but nothing major. I

>went to Vanderbilt in Nashville to see the doctor who diagnosed me on

>April1,2004 and he said I had lost all reflexes in my hands, arm and

>face. I was just wandering if anyone else has the pump and would be

>willing to talk to me about a few different subjects. I have started

>having panic attacks and alot more weakness and I am getting scared!

>I am a 31 year old married female with a 12 year old son. I would

>appreciate any help or advice. Thank you Renea VAnderpool BG KY

>

>

>

>

>

>

[Guest guest]

Sara I was diagnost at 44yrs of age abd now 46 also.

Re: baclufen pump/loss of reflexes

Renea, I'm thinking about the pump. Keep me posted on how things

go. I'm currently taking Bacoflen pills. I'm getting alot of leg

cramps when I wake up in the morning. Had you been on the pills

prior to getting the pump? I hope all works out for you. I thought I

was one of the youngest (age 46) with PLS. You are very young. When

did you start having symptons? God Bless. Sara

> Hi, I have been in the group before, but I had a bad spell for a

few

> months and have lost track of the new information. I had a

baclufen

> pump inserted Nov 03, I have had a few problems but nothing major.

I

> went to Vanderbilt in Nashville to see the doctor who diagnosed me

on

> April1,2004 and he said I had lost all reflexes in my hands, arm

and

> face. I was just wandering if anyone else has the pump and would

be

> willing to talk to me about a few different subjects. I have

started

> having panic attacks and alot more weakness and I am getting

scared!

> I am a 31 year old married female with a 12 year old son. I would

> appreciate any help or advice. Thank you Renea VAnderpool BG KY

[Guest guest]

Hello Mike Gray,

As usual your emails are interesting and informative.

Question. Did your neuro leave you on baclofen? What would you

consider a large dose, large enough to weaken your reflexes?

Couldn't it be the progression of the PLS causing the weak reflexes? Are

you on zanaflex?

I am sure I have an email of yours listing your meds but would take a

while to dig it out.

Thanks for your background on meds, etc.

Arlene

[Guest guest]

Arlene in TX, hi!

Yes, I am still on baclofen 80mg/day and Zanaflex 16mg/day, along with

Klonopin 7mg/day. I take others, too, for other reasons. I'm on an

anti-viral, Symmetrel, that helps keep me from getting all sorts of

colds and things, but usually about once a year I get something that

immediately goes to my lungs. I almost made it through this year, but

just developed it last Friday. Now I have to call my Pulmonary Critical

Care Specialist tomorrow and get a prescription to stop this thing

before I end in the hospital with pneumonia. That has happened before

and that is why I have the Specialist. He is very good about treating

over the phone because he really knows my case very well. He is also a

rather amazing Dr., just like my neuro. I'm lucky to have found both

when they were needed.

I asked my neuro about a large dose and he replied that about 120mg/day

would be a large dose. And, no, it is not the progression of the PLS.

When he first saw me, I had hyper reflexes and he doubled the amount of

baclofen I was taking. My reflexes have been like this now for about 8

years. Except for the left leg, which has begun to show some slight

reflex action. I still have an occasional hyperstartle reflex, which

causes me to only use cups that have lids on them. I don't enjoy wearing

coffee or other liquids, or seeing them around the house or my office.

Others used to avoid me until I started using the lid covered mugs and

cups. :-) . Guess they didn't like wearing them either.

riddlea@... wrote:

>Hello Mike Gray,

>

>As usual your emails are interesting and informative.

>Question. Did your neuro leave you on baclofen? What would you

>consider a large dose, large enough to weaken your reflexes?

>Couldn't it be the progression of the PLS causing the weak reflexes? Are

>you on zanaflex?

>I am sure I have an email of yours listing your meds but would take a

>while to dig it out.

>Thanks for your background on meds, etc.

>

>Arlene

>

>

>

>

>

>