2 replies to this topic

[Hotrodgimp]

Has any one else had this same problem? I have neurological sarcoid which left me with t-spine damage. One of the problems I suffer from besides partial paralysis in my legs is muscle spasticity. I used to walk very stiff legged and could only use my right leg to climb stairs, sort of the way little kids do. I had a lumbar puncture and test dose for a pump in March of 05 and after staying flat on my back for a few hours, the Neuro and PT. got me up walking first with a walker and then with a cane. I couldn't believe how well I was walking and I even climbed stairs using both legs! A month later I had the pump put in and after two weeks in the rehab hospital I was sent home. My pump setting is at 40 mcg per day which my Dr. says is very low. He said the test dose was 60 mcg and when we try to turn my pump up higher I lose muscle tone in my legs. I have been doing physical therapy to build strength with minimal results but I still can't understand why I had such a good test result and cant get as good results with the pump. My Dr. has no answers either. I do walk a little better with the pump and I still get some spasms espescially at night but not nearly as bad as before, and I still struggle with stairs. Is the catheter placed at the same level as the test dose was done or does it not matter? Jim

[lori2050]

disabledandbored, on Dec 18 2006, 05:16 PM, said:

Has any one else had this same problem? I have neurological sarcoid which left me with t-spine damage. One of the problems I suffer from besides partial paralysis in my legs is muscle spasticity. I used to walk very stiff legged and could only use my right leg to climb stairs, sort of the way little kids do. I had a lumbar puncture and test dose for a pump in March of 05 and after staying flat on my back for a few hours, the Neuro and PT. got me up walking first with a walker and then with a cane. I couldn't believe how well I was walking and I even climbed stairs using both legs! A month later I had the pump put in and after two weeks in the rehab hospital I was sent home. My pump setting is at 40 mcg per day which my Dr. says is very low. He said the test dose was 60 mcg and when we try to turn my pump up higher I lose muscle tone in my legs. I have been doing physical therapy to build strength with minimal results but I still can't understand why I had such a good test result and cant get as good results with the pump. My Dr. has no answers either. I do walk a little better with the pump and I still get some spasms espescially at night but not nearly as bad as before, and I still struggle with stairs. Is the catheter placed at the same level as the test dose was done or does it not matter? Jim

Maybe they need to up you slowly. If they increase me to fast I have the same results.

Maybe the need to increase your dosage slowly. I have the same reaction as you if they up my dose to fast.

Lori

[tom71]

what you are experiencing is very common, I've personally never heard of someone recieving such a low dose, I was started out at 100mcg and increased a couple different times first to 150mcg's then to 250mcg's all within the first 6 months of having the pump.
Good Luck,
Tom