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miabethr

New member
Joined
Jun 27, 2008
Messages
8
Reason
DX UMND/PLS
Diagnosis
10/2007
Country
US
State
IL
City
Moline
hi sral

I took the baclofen for about a year and a half and my legs just kept getting stiffer and stiffer and i could not take a large enough dose to give any relief and it also made me very sleepy. By the end of the day i could barely walk because of the stiffness. Too much baclofen also made me foggy and many times i felt over medicated and with being a teacher this was not tolerable within my classroom. with the pump i can have a larger dose and it doesnt pass through my system so there are no side effects. my legs are so much better and i can walk at the end of the day with much more ease. i was and am willing to try anything at this point so i can continue working. i know there have been many problems for people with the pump, but it was worth the risk for me because living the way i was- was no fun, painful, and mentally draining- knowing that i may need help just to leave my job at the end of the day because i was so stiff. so far so good - i am keeping the faith!

:lol:Mia
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Mia,

I'm very happy to hear that it has worked for you. Everyone's situation is different and each individual needs to do what is best for them.

By the way, how long did your first symptom start? I ask this because the Dr said my mom was still far from needing a pump and her legs have been impacted almost 18 months now.

Wishing you well
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
178
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
For those using the Baclofen Pump.

Thank you all for sharing your thoughts.

I'm up to about 45-65 milligrams of Baclofen a day. My brain is starting to get foggy and I'm not liking it. For those using a pump, what are the pros and cons.

I also have what are call tsunami spasms that literally knock the wind out of my sails. 2 milligrams of valium are used to cut those down. They happen only when I've driven myself too hard or if I'm exhausted and can't lay down or if I get too cold and try to move. My body stiffens up into a cramp spasm, almost looks like a bolt of lightening has hit me as a jolt. I've learned to be sensitive to those times so I can predict them coming on.

Weird disease isn't it? In every other way I am so healthy. So far my right side isn't affected but my left side is getting more and more stiff, weak, foot drop, spastic and my fine motor skills are going fast. Often every movement is effort. I 'look' so healthy....that's the most frustrating for me...Anyway, back to the pump. What are the pros and cons would you say to getting a pump. Thanks for any insight. Frizz
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,743
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hello frizzel

i have had the tsunami spasms that you describe,thankfully not too ofton.
i think they are the myoclonus but more violent,like myoclonic epilepsy.
had a couple of real nasty ones,one that caused my body/back to suddenly snap and double in two.
i dared not move as i thought it had broken my back.
another time i was sat at the end of the sofa,just put my cup of tea on the table.
i was suddenly thrown back accross the sofa.
they happen so fast and without warning but i am positive i can hear a snapping noise in the back of my head when they happen.
i don,t think baclofen can help,you may need a anti-spasmodic drug that is used to treat sezuires.
mine are not ofton so i declined drugs for it,it did,nt want to get into taking serious epilepsy drugs.
i hope you find something that works.
baclofen pumps are very good if you can not tolerate the tablets or need larger doses.
take good care.
caroline:-D
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
178
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
You CAN relate Caroline.

I wrote a note earlier before logging in and lost it. You know about the tsunami spasms that are literally disabling. I appreciated your honesty in what you also face. The body snapping and doubling in two...Mine lasted between 15 minutes and 2 hours. I can feel my body stiffening up almost like wet cement drying me into a very uncomfortable space and then they hit...so I can often tell when my body is going into one. It's comes on very quickly though. Now have meds that will at least stop them within a few minutes. Then, I'm pretty exhuasted.

Do you have a pump Caroline or do you know of anyone who does?
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,743
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi frizzel

i beg your parden i do get the stiffening before sometimes but the spasm hits within a couple of seconds,too fast to initially register the fact one is going to happen.
the most mine has lasted for in a severe one is about half an hour,after a bad one your whole body aches and you can feel exhausted for hours or days just like after a seizure.
my mum told my neuro actually that as a baby upto the age of 12yrs i suffered from occasional unexplained seizures.
at the start of my illness these spasms along with all the umn symptoms were more of a problem.
now fatigue and muscle weakness has progressed more over the past two years,and some slight atrophy.
i take baclofen tablets,i have been on the 8yrs now so maybe the have quietend down the umn symptoms a bit.
i know of a few who have used the pump,there was a lady on the yahoo pls forum who could do nothing as she was so rigid.
she had the pump fitted and it changed her life so much she went traveling.
we are all different so we need to find what works for ourselves,experiment with different things to see what works.
i hope you are not in too much pain or discomfort,and your medication helps.
take good care.
caroline:-D
 
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