Mike in Maine
Distinguished member
- Joined
- Oct 18, 2013
- Messages
- 244
- Reason
- PALS
- Diagnosis
- 10/2013
- Country
- US
- State
- PA, No longer live in ME
- City
- Pocono's
As most of you know, I have UNM ALS and it is very slow progressing, again as most of you know one of the major symptoms of UMN ALS is spasticity. Well I have always had very bad spasticity, have a baclofen pump (385 micrograms day) works pretty well on my lower body, but does very little for my upper body. I have always had bad spasticity in my shoulders and arms will it decided on the 27th of Dec, to move down to my chest. Went to the local ER and they had no clue about ALS and spasticity; justifiably so they thought it was a heart attack and as so as they decided it wasn't heart attack and out the door I went. Called the Doc at the VA ALS clinic in The Bronx ( what a great bunch of folks). Been on the phone or talking to them almost every day since. To make a long story shorter, I'm now on 160 mg of oral Baclofen a day( along with the pump), taking some every 4 hours, 45 mg of Diazepam and some other drugs I can't remember the name of. I'm in a in a drug haze most of the time and the rest napping; at least three a day of 1.5 hours long, I guess the naps are better then the other option. This seems to be the only to control my spasticity in the chest and ribs, it is nice to be able to take a breath. The clinic is sending me a new drug for spasticity, none of the pharmacies around here carry it. Hopefully it works cause it doesn't make you tried. Will not be posting much, pretty much just want to sit on the couch and watch TV. Long post, thanks for listening.
Mike
Mike