ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,348
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
This post is specific to those diagnosed with probable or definite PLS.
I recently had yet another ALS clinic appointment. The neuro had a resident with them, so my exam was both longer and more thorough than usual- and conducted with running commentary for teaching purposes. I received my report a few days ago and two things stood out to me- observed intention/ impersistence tremor and ataxia.
The doctor detected intention tremor when testing for fine motor issues- more so on my most affected side. They also detected something called impersistence tremor in some areas, particularly with my tongue.
There was also observed mild ataxia in all four limbs- which is new. Do others with PLS experience ataxia? I confess I understood ataxia would point away from MND, but here I am, now mildly ataxic and still with an MND diagnosis.
Once again, the doctor assured me that it's not unusual that PLSers experience faciculations when she observed them during my exam. She does not know the mechanism, but they can definitely be present in those with UMN. Pain and autonomic issues are also part of the pattern she's observed in her years as an ALS specialist. Her words with regards to a few different symptoms for ALS and PLS that are not acknowledged in the usual symptom list is "The people who write the textbooks clearly do not have access to real patients."
The neuro also reported that in her experience, those with lower limb onset PLS often have bulbar issues develop almost simultaneously (usually mild initially), or shortly after, and symptoms appearing to skip the upper limbs until further down the road. I had never heard that before. She was explaining pattern recognition to the resident, and I just had the good fortune to be the ambulatory teaching tool for her to use as a model for MND.
Anyhow, interested to hear from folks with primarily UMN issues- tremor and ataxia are new developments for me and I am wondering how common they may be. I remain in the probable PLS/UMN onset ALS category, despite the new development of tremor and ataxia.
I recently had yet another ALS clinic appointment. The neuro had a resident with them, so my exam was both longer and more thorough than usual- and conducted with running commentary for teaching purposes. I received my report a few days ago and two things stood out to me- observed intention/ impersistence tremor and ataxia.
The doctor detected intention tremor when testing for fine motor issues- more so on my most affected side. They also detected something called impersistence tremor in some areas, particularly with my tongue.
There was also observed mild ataxia in all four limbs- which is new. Do others with PLS experience ataxia? I confess I understood ataxia would point away from MND, but here I am, now mildly ataxic and still with an MND diagnosis.
Once again, the doctor assured me that it's not unusual that PLSers experience faciculations when she observed them during my exam. She does not know the mechanism, but they can definitely be present in those with UMN. Pain and autonomic issues are also part of the pattern she's observed in her years as an ALS specialist. Her words with regards to a few different symptoms for ALS and PLS that are not acknowledged in the usual symptom list is "The people who write the textbooks clearly do not have access to real patients."
The neuro also reported that in her experience, those with lower limb onset PLS often have bulbar issues develop almost simultaneously (usually mild initially), or shortly after, and symptoms appearing to skip the upper limbs until further down the road. I had never heard that before. She was explaining pattern recognition to the resident, and I just had the good fortune to be the ambulatory teaching tool for her to use as a model for MND.
Anyhow, interested to hear from folks with primarily UMN issues- tremor and ataxia are new developments for me and I am wondering how common they may be. I remain in the probable PLS/UMN onset ALS category, despite the new development of tremor and ataxia.