halfin
Senior member
- Joined
- Jun 29, 2009
- Messages
- 540
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- CA
- City
- Santa Barbara
Hello, everyone. I have posted a couple of messages elsewhere on the site but thought I would post here and introduce myself. I am male, 53 years old, very fit and in excellent health, and was diagnosed last week with ALS, at the UCLA neurology clinic.
I first started noticing problems at the end of April, with my speech. My tongue was not working right, my words were slow, "sticky" and a bit slurred. My wife had actually been noticing problems in my talking for some time before then: hoarseness, a weak "breathy" quality, frequent pauses for breath, and a "wet" sound like I had a lot of saliva in my mouth. She had been urging me to schedule my overdue annual physical but I put it off until I ran into this slurring problem. That really worried me.
My doctor referred me to the neurologist, who administered the usual battery of tests we are all familiar with. All were negative except the EMG. He referred me to UCLA which specializes in these conditions. For the first time ALS was mentioned as a possible diagnosis, but he emphasized that other things were still possible and we should wait and see what UCLA said.
The first visit to UCLA was encouraging. The ALS doctor looked me over and said I didn't look like an ALS patient. He thought maybe myasthenia. The doctor scheduled a single-fiber EMG for a few weeks later, which worked out to be last week.
We didn't expect much to come out of the EMG last week. At most it sounded like it might leave various possibilities open, and might even rule out some serious problems. In fact I scheduled a trip the next day, leaving town for a week to go take care of my mother, whose health is failing.
However, the doctor did a regular EMG first, and he saw noticeable worsening from my earlier EMG in May. There were new indications of progressive nerve damage. On this basis, plus some weakness in my hands, he did diagnose ALS.
This was a big shock, made worse by the need to leave town the next day and be on my own taking care of my mother, which is pretty challenging. Fortunately, when she heard the news my sister rearranged her schedule and came out to help, so I was able to go home sooner. Since getting home I have felt much better, more comfortable and able to begin to deal with this unexpected news.
The good thing is that the ALS specialist says that my symptoms are extraordinarily slight, in fact I have the least symptoms of any of his ALS patients. I credit my neurologist for his insight in quickly referring me to the proper specialist so that I was able to get diagnosed early. I have read so many stories here of people who have bounced around from doctor to doctor, sometimes for years, getting worse the whole time, before they get a diagnosis. I know and trust my neurologist very well. We went to college together, and at our college the dorms were more like coed fraternities - you live in the same dorm all four years and become quite close to the other students. "Charlie" was in my dorm and I knew him for several years in college. I had heard he had moved to my town and was a practicing neurologist, but I didn't seem him professionally until recently, when all this flared up. He's a really smart guy as well as kind-hearted, and I feel very lucky to have such a supportive and knowledgeable doctor here in town.
I started on Rilutek on Tuesday, and coincidentally or not, my speech has been very good this week. Last week it was quite bad, I felt myself struggling to speak, but I was under a lot of stress, which can't help. Yesterday we also went to the ALS Clinic at UCLA and were seen by a few specialists. They were all so helpful, friendly and supportive that we couldn't help but feel much better after that visit. It is great to know that there is a team like this available to support us as we move forward through this challenge.
I have written here about "us" and "we", because my wife Fran and I are facing this together, in a way we could never manage alone. I tend to be an accepting person, while Fran is a fighter. I am putting my trust in her to help me do whatever is possible to give me the best odds for long survival and good health.
I first started noticing problems at the end of April, with my speech. My tongue was not working right, my words were slow, "sticky" and a bit slurred. My wife had actually been noticing problems in my talking for some time before then: hoarseness, a weak "breathy" quality, frequent pauses for breath, and a "wet" sound like I had a lot of saliva in my mouth. She had been urging me to schedule my overdue annual physical but I put it off until I ran into this slurring problem. That really worried me.
My doctor referred me to the neurologist, who administered the usual battery of tests we are all familiar with. All were negative except the EMG. He referred me to UCLA which specializes in these conditions. For the first time ALS was mentioned as a possible diagnosis, but he emphasized that other things were still possible and we should wait and see what UCLA said.
The first visit to UCLA was encouraging. The ALS doctor looked me over and said I didn't look like an ALS patient. He thought maybe myasthenia. The doctor scheduled a single-fiber EMG for a few weeks later, which worked out to be last week.
We didn't expect much to come out of the EMG last week. At most it sounded like it might leave various possibilities open, and might even rule out some serious problems. In fact I scheduled a trip the next day, leaving town for a week to go take care of my mother, whose health is failing.
However, the doctor did a regular EMG first, and he saw noticeable worsening from my earlier EMG in May. There were new indications of progressive nerve damage. On this basis, plus some weakness in my hands, he did diagnose ALS.
This was a big shock, made worse by the need to leave town the next day and be on my own taking care of my mother, which is pretty challenging. Fortunately, when she heard the news my sister rearranged her schedule and came out to help, so I was able to go home sooner. Since getting home I have felt much better, more comfortable and able to begin to deal with this unexpected news.
The good thing is that the ALS specialist says that my symptoms are extraordinarily slight, in fact I have the least symptoms of any of his ALS patients. I credit my neurologist for his insight in quickly referring me to the proper specialist so that I was able to get diagnosed early. I have read so many stories here of people who have bounced around from doctor to doctor, sometimes for years, getting worse the whole time, before they get a diagnosis. I know and trust my neurologist very well. We went to college together, and at our college the dorms were more like coed fraternities - you live in the same dorm all four years and become quite close to the other students. "Charlie" was in my dorm and I knew him for several years in college. I had heard he had moved to my town and was a practicing neurologist, but I didn't seem him professionally until recently, when all this flared up. He's a really smart guy as well as kind-hearted, and I feel very lucky to have such a supportive and knowledgeable doctor here in town.
I started on Rilutek on Tuesday, and coincidentally or not, my speech has been very good this week. Last week it was quite bad, I felt myself struggling to speak, but I was under a lot of stress, which can't help. Yesterday we also went to the ALS Clinic at UCLA and were seen by a few specialists. They were all so helpful, friendly and supportive that we couldn't help but feel much better after that visit. It is great to know that there is a team like this available to support us as we move forward through this challenge.
I have written here about "us" and "we", because my wife Fran and I are facing this together, in a way we could never manage alone. I tend to be an accepting person, while Fran is a fighter. I am putting my trust in her to help me do whatever is possible to give me the best odds for long survival and good health.
