rmt
Distinguished member
- Joined
- Sep 18, 2019
- Messages
- 376
- Reason
- Lost a loved one
- Diagnosis
- 07/2019
- Country
- US
- State
- WA
- City
- Seattle
My husband received a "probably PLS" diagnosis in July 2019 (from an ALS clinic in a major hospital). I've been lurking around the forum for a while but couldn't bring myself to post anything. But you are all so supportive and helpful, so I figured it was time.
Anyway, back to my husband. He is 70. His only symptoms are his speech and swalllowing. Late spring/early summer of 2018, we noticed he was speaking more slowly. By November 2018, he was slurring some, but not all the time. I'd say he speaks slowly and slurs occasionally. And his voice sounds different than before. He sounds a little nasal and hoarse. He had some mild swallowing issues mostly with liquids, but that seem to be much better now (or is he just more careful?).
Since November 2018, his symptoms haven't changed or gotten worse. He has no other symptoms besides his speech and the mild swallowing issue. He lifts weights almost every day and we walk a lot. He plays guitar. So his arms and legs seem fine. Oddly, he can chew gum for hours and never gets tired. He can whistle. So his jaw and face muscles seem fine.
He sounds the best in the morning and generally sounds a little worse by the end of the day. In a long conversation, he gets more nasal and hoarse and sometimes slurs more at the end. Then it recovers if he doesn't talk for a while. It always gets better over night, so each morning he starts at about the same speech quality.
When he was working, his speech would get SO bad by the end of the work day. Then it would recover over night. Each day of the work week, it would get a little worse. And then he would recover over the weekend. He is retired now, and generally doesn't have the giant swings in his speech that he had while working. Interestingly, after he works out, his speech is worse for a while and then recovers. And when he is stressed or excited, his speech is definitely worse. He sounds terrible at every doctor appointment and when we walk out the door he starts sounding better almost immediately. Not perfect, but back to his baseline.
He has had so many tests and everything came back normal. He had an EMG in April 2019 and it was totally normal. He had a laryngeal EMG in August 2019 and it was normal. MRI last fall was normal for age. Repeat MRI with contrast in October 2019 was normal for age. He tested negative for myasthenia gravis antibodies (AChR and MuSK) and Kennedy's disease. His FVC was 107% in July. No clinical weakness anywhere, including his face and tongue. One speech pathologist though his dysarthria sounded flaccid. Another thinks it sounds more ataxic. And the ALS specialist thinks it sounds spastic.
Since the EMG was normal, and the myasthenia antibodies were negative, the neuromuscular specialist thinks it is probably PLS. Yes, we know the statistics about the probability of progression to ALS. I spend a lot of time in a state of panic that it is going to progress to ALS.
Do any of you have such a variability in your symptoms throughout the day? Do you have any suggestions for things to do or avoid to keep things more consistent?
Thanks so much for any input you can give. As you know, this is all very overwhelming but I'm happy to have a place like this to come for support and insight.
Anyway, back to my husband. He is 70. His only symptoms are his speech and swalllowing. Late spring/early summer of 2018, we noticed he was speaking more slowly. By November 2018, he was slurring some, but not all the time. I'd say he speaks slowly and slurs occasionally. And his voice sounds different than before. He sounds a little nasal and hoarse. He had some mild swallowing issues mostly with liquids, but that seem to be much better now (or is he just more careful?).
Since November 2018, his symptoms haven't changed or gotten worse. He has no other symptoms besides his speech and the mild swallowing issue. He lifts weights almost every day and we walk a lot. He plays guitar. So his arms and legs seem fine. Oddly, he can chew gum for hours and never gets tired. He can whistle. So his jaw and face muscles seem fine.
He sounds the best in the morning and generally sounds a little worse by the end of the day. In a long conversation, he gets more nasal and hoarse and sometimes slurs more at the end. Then it recovers if he doesn't talk for a while. It always gets better over night, so each morning he starts at about the same speech quality.
When he was working, his speech would get SO bad by the end of the work day. Then it would recover over night. Each day of the work week, it would get a little worse. And then he would recover over the weekend. He is retired now, and generally doesn't have the giant swings in his speech that he had while working. Interestingly, after he works out, his speech is worse for a while and then recovers. And when he is stressed or excited, his speech is definitely worse. He sounds terrible at every doctor appointment and when we walk out the door he starts sounding better almost immediately. Not perfect, but back to his baseline.
He has had so many tests and everything came back normal. He had an EMG in April 2019 and it was totally normal. He had a laryngeal EMG in August 2019 and it was normal. MRI last fall was normal for age. Repeat MRI with contrast in October 2019 was normal for age. He tested negative for myasthenia gravis antibodies (AChR and MuSK) and Kennedy's disease. His FVC was 107% in July. No clinical weakness anywhere, including his face and tongue. One speech pathologist though his dysarthria sounded flaccid. Another thinks it sounds more ataxic. And the ALS specialist thinks it sounds spastic.
Since the EMG was normal, and the myasthenia antibodies were negative, the neuromuscular specialist thinks it is probably PLS. Yes, we know the statistics about the probability of progression to ALS. I spend a lot of time in a state of panic that it is going to progress to ALS.
Do any of you have such a variability in your symptoms throughout the day? Do you have any suggestions for things to do or avoid to keep things more consistent?
Thanks so much for any input you can give. As you know, this is all very overwhelming but I'm happy to have a place like this to come for support and insight.