Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 , I will hope for the best for you. dale ALS clinics???? > Has anybody here been to an ALS clinic before? I am having a breathing assesment done on Thursday at the MDA/Als clinic. I have been diagnosed with pls possibly it is converting to show signs of als. This has been a possibility all along for me as well as others I would think. I am curious to others' experiences at their als clinic. I am also on the yahoogroup living with als and have heard that the appointment can take 3 1/2 hours or so since I will be visiting with different therapists( occupational, rehab.,respiratory,speech etc.). Is that your experience? I am getting nervous because if this is truly als i am not sure i want to know. The problem would be if the breathing problem escalates and i am caught in an emergency situation. I guess i would want to be prepared. Duh!! I guess I will have to find out. I would love to hear others' stories. I have heard others here mention spasticity of their diaphram. I am hoping that is what is going on. It just feels like you cannot catch your breath. It is off and on during the day and night for really no reason. I do notice it more when I wake up and when I talk. It is probably because i am such a long winded twitterpated talker. Thanks you guys! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 In a message dated 12/2/2003 1:43:08 PM Pacific Standard Time, dalerutschow@... writes: appointment can take 3 1/2 hours or so since I will be visiting with different therapists( occupational, rehab.,respiratory,speech etc.). Is that your experience? , Yes, that's the way it is at the UCSF ALS Research Center where I go. I used to go to clinic every 6 months but I didn't think I needed to see everyone staff every 6 months, so I pick and chose who I want to see and they are okay with that. I do see the entire staff once a year. I usually opt to see the respiratory therapist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Hi , I have PLS..(5 years ) I was on 10mg Baclofen for a long time and then upped it to 20mg about a year ago... About 6 mos ago i started progressing... going from lower limbs and speech problems to arms and hands.Always had balance problem. Anyway my neuro upped baclofen to 30mgs and said it would either help or break me....I broke. my whole body became like a board within a week. The diaphragm in my lungs stopped several times day and night....I got oxygen 24/7 and weaned off baclofen with diazepam in a week and started on neurontin...900mgs a day and had to increase to 1200mgs to take care of all spasms and spasticity...I have not had even one episode of the lung diaphragm freezing up or atopping since....still get short of breath but that goes with this disease, I'm sure.... I just wanted to ask you if you were on baclofen but thought I better give an explanation..... good luck with the test and if you have to have something let's hope for PLS rather than ALS.. prayers and best wishes Jeanette, Tampa Quote Link to comment Share on other sites More sharing options...
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