BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Hi, all ... I was diagnosed with ALS on 5/5 of this year, with bulbar onset. Symptoms started in March, 2006. I've been referred to the UCLA neuromuscular center, but am getting a perpetual runaround trying to make an appoint. (Since early May, it's been "call back Monday, call back Thursday, call back Monday, etc.) They can't find my paperwork, or it's "being reviewed"; next time I call, it's been lost again, then next time is being reviewed again, etc.
This is my problem (aside from ALS): Even when I'm finally "allowed" to make an appointment, I understand it will be October or November before I can even GET an appointment to actually see a neurologist.
I was diagnosed at UC Irvine, which is too far for me to drive on a regular basis for care. Hence the referral to UCLA.
My speech is almost gone now ... it has deteriorated very rapidly lately. Choking, swallowing remain poor but holding steady. (knock wood) After losing 25 pounds the first 2 years, I've managed to gain 4 since the diagnosed. Had an episode of shortness of breath recently ... lasted several days ... which went away, but I know it won't stay away.
Am also starting to have twitches in my left bicep and forearm, and a strange curling in of two fingers on both my left and right hands, which I assume are contractions. So far, I can gently straighten out my fingers when they curl in, and then the curling stops, but I assume this is a sign it's spreading.
By the time I actually get into the neuro program, I am afraid it will be too late for Rilutek to do me any good. I'd like to start it now, and from reading this forum, I've learned that sometimes people turn to their primary care physicians for things like lithium.
I want to ask my PCP to prescribe Rilutek. Are there any contraindications? I've heard bulbar onset life expectancy is 18 months, but obviously that's wrong in many cases ... I'm in month 27 and still alive and kicking ... but I don't think I have a spare 6 months to loll around while waiting for treatment. I'm 72, and know I have to die sometime (probably soon), but a couple extra months would be great!
Sorry this is so long. I can't seem to write a short message. Any feedback is appreciated!
Beth
This is my problem (aside from ALS): Even when I'm finally "allowed" to make an appointment, I understand it will be October or November before I can even GET an appointment to actually see a neurologist.
I was diagnosed at UC Irvine, which is too far for me to drive on a regular basis for care. Hence the referral to UCLA.
My speech is almost gone now ... it has deteriorated very rapidly lately. Choking, swallowing remain poor but holding steady. (knock wood) After losing 25 pounds the first 2 years, I've managed to gain 4 since the diagnosed. Had an episode of shortness of breath recently ... lasted several days ... which went away, but I know it won't stay away.
Am also starting to have twitches in my left bicep and forearm, and a strange curling in of two fingers on both my left and right hands, which I assume are contractions. So far, I can gently straighten out my fingers when they curl in, and then the curling stops, but I assume this is a sign it's spreading.
By the time I actually get into the neuro program, I am afraid it will be too late for Rilutek to do me any good. I'd like to start it now, and from reading this forum, I've learned that sometimes people turn to their primary care physicians for things like lithium.
I want to ask my PCP to prescribe Rilutek. Are there any contraindications? I've heard bulbar onset life expectancy is 18 months, but obviously that's wrong in many cases ... I'm in month 27 and still alive and kicking ... but I don't think I have a spare 6 months to loll around while waiting for treatment. I'm 72, and know I have to die sometime (probably soon), but a couple extra months would be great!
Sorry this is so long. I can't seem to write a short message. Any feedback is appreciated!
Beth