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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
 
It is great Mike that they have you something that is helping...glad you are getting easy rest. Thanks for the word! Sending good thoughts your way.

tc
 
Dear Mike,

I'm sorry for what you went through.
It IS so scary when "normal hospitals or physicians" don't get it about ALS.

I AM so glad you found knowledgeable medical professionals at the
clinic in The Bronx!
I'm glad you are getting the rest you need, and that your breathing is better now.
I, too, hope that the new medication will work, so that you won't be as tired.

Thank you for sharing this story with us.
We will be thinking of you, and
Sending our best,
Laura.
 
Our VA has told us to get to the nearest hospital in a crisis then call the head of our VA ALS team. When stabilized they will move you to the VA.
 
Mike, sorry you went through that. I'm hoping the new drug is truly good (what is it?) and you can get some rest and easy breathing.

Take care- I am thinking of you.

~Fiona
 
Mike, I'm thankful that you were able to get such great help from the VA ALS team. I'm sorry you're going through this and hope your're able to check in every now and then.
Warm wishes,
Becky
 
Wow. That sounded scary, Mike. So glad thats behind you and hopefully the new drugs will do the trick. What is the name of the drug you are trying?
Deb
 
Hey mike, hope things come around for ya. Sending good energy your way. Take care chally
 
Hey mike
Glad you have it sorted.
Hope you find some decent telly to watch!
God bless, Janelle x
 
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