I'm back from my first MDA/ALS Clinic
Submitted by Shatzie on Sun, 05/04/2008 - 15:13
I went to my first MDA/ALS Clinic on Friday in Houston. They really have it down to a science there. There were 40+ patients and everyone had at least one family member with them, most had two or three. It started at 8:00 A.M., but I was encouraged by another patient to get there as close to 7:00 A.M. as possible, so we got there at 7:20. I was the fourth person to sign in. I was seen by:
Dietitian
Appel Score Grading
Occupational Therapy Grading
Occupational Therapist
Respiratory Therapist
Pulmonologist
Speech Pathologist
Physical Therapist
MDA Representative
Social Worker
Sleep Lab Doctor
Neurologist
Attorney
Financial Planner
Although I was told to be prepared to stay until 3:00 P.M., because I was the fourth to get there, I was the fourth to leave about 1:15 P.M.
All my tests were very close to what they were when I was diagnosed in February. Some were slightly better, others slightly worse, but they all were in the margin or error due to different testers or just the fact that someone will test slightly different from day to day. So the official word is that there has been NO progression since February. I saw a different neurologist this time and he seconded Dr. Appel's diagnosis of 'bulbar ALS with caution'. The 'with caution' is because I still do not show enough of the UMN symptoms, primarily spacticity, to be given a certain diagosis. So all the news is good. Hopefully Dr. Appel will be right. He predicted that I would either progress so slowly or plateau, and in a year or so we might re-evaluate the diagnosis.
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