Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi There I just got back home from my five hour trip up to Cleveland Clinic. This is year five and I still only have upper neuron involvement. YEAH!!! So I had to ask why not the PLS dx. The answers were: *my case doesn't even fit nicely into the PLS scenario--told you I'm unique. *they still worry about conversions to ALS - you know - always prepare for the worst and then feel blessed if it is not the worst. *I liked this reason best - with 'probable ALS' in the ALSA database I have more opportunities to participate in studies. Now the bad news. Everything is relative you know. My left leg was so rigid (made even worse by the drive) that the therapist had his whole body weight on it trying to loosen it up. Haven't had a man on me like that since I quit dating. lol My Zanaflex was increased, more therapy for the leg, and 'you will use a cane, Ms Eva.' I told him it wasn't a cane but a magic wand. If that doesn't work...hello baclofen pump. The worst part was getting out of the car at the hotel, rigid and with a rusted tin man of OZ walk...with my cane...trying to pull by suitcase to my room. Hotel didn't even have automatic doors let alone a doorman....but the price was right. lol Eva in WV (for now) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Isn't that a relief? Whenever I get my test and it's ok I try to jump off the table. Then I slowly slide off ;-) congrats. dale Back from ALS Clinic > Hi There > I just got back home from my five hour trip up to Cleveland Clinic. > This is year five and I still only have upper neuron involvement. > YEAH!!! > So I had to ask why not the PLS dx. The answers were: > *my case doesn't even fit nicely into the PLS scenario--told you I'm > unique. > *they still worry about conversions to ALS - you know - always > prepare for the worst and then feel blessed if it is not the worst. > *I liked this reason best - with 'probable ALS' in the ALSA database > I have more opportunities to participate in studies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 What a relief that has to be for you. Awesome news, sandy Back from ALS Clinic Hi There I just got back home from my five hour trip up to Cleveland Clinic. This is year five and I still only have upper neuron involvement. YEAH!!! So I had to ask why not the PLS dx. The answers were: *my case doesn't even fit nicely into the PLS scenario--told you I'm unique. *they still worry about conversions to ALS - you know - always prepare for the worst and then feel blessed if it is not the worst. *I liked this reason best - with 'probable ALS' in the ALSA database I have more opportunities to participate in studies. Now the bad news. Everything is relative you know. My left leg was so rigid (made even worse by the drive) that the therapist had his whole body weight on it trying to loosen it up. Haven't had a man on me like that since I quit dating. lol My Zanaflex was increased, more therapy for the leg, and 'you will use a cane, Ms Eva.' I told him it wasn't a cane but a magic wand. If that doesn't work...hello baclofen pump. The worst part was getting out of the car at the hotel, rigid and with a rusted tin man of OZ walk...with my cane...trying to pull by suitcase to my room. Hotel didn't even have automatic doors let alone a doorman....but the price was right. lol Eva in WV (for now) Quote Link to comment Share on other sites More sharing options...
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