Finally, here.
I have been a longtime lurker. I have been tempted to ask questions, but ultimately I decided to wait. And I waited for a long time. Having been finally diagnosed, I will let you know how everything began.
In the spring of 2016, I started noticing some problems with my left hand. I did not give them much attention. I thought it was just a pinched nerve and ignored it. It was just more rigidity than usual, but I could still perform the same movements with more time, and with a fine right hand it was easy to make up for my left hand problems.
It was only a year after, around March 2017, that I had a significant fall. I realized that I was dropping the left foot and I would fall easily in uneven terrain. I just thought it was some precocious aging (I was 62) but my family insisted I see a doctor. So I had my first appointment with a neurologist on April 2017, approximately a year after symptom onset.
The neurologist gave me a diagnosis: Parkinsonism! Perhaps atypical, but Parkinson's nevertheless. He gave me Sinemet and told me that all was well.
Sinemet made everything worse. My head was giddy and I was finding no relief. I went for a second neurologist and he confirmed the diagnosis (Parkinsonism with very pronounced rigidity, as he said). Strength test was normal.
On June 2017, it became clear that Sinemet was not working at all. A third neurologist gave a more precise diagnosis (Multi-Systems Atrophy). It is a serious disease, with a life expectancy of 8 years. It fit with my extreme rigidity and my reaction against Sinemet, but I did not have hypotension, which is the landmark symbol.
Finally, on September 2017 a new neurologist suggested I undergo imaging testing. Surprise: Parkinson's was no longer a possibility! It was a shock, but it made sense. The neurologist asks me to do an EMG. I have my EMG in November 2017: everything clean, completely.
At this point, I go through a ridiculous amount of tests. I have lost track of all of them. My symptoms progress: I am much more rigid on my leg and my hand, with affectation on my other two limbs. Clear hyperreflexia and hypertonia. The neurologist ventures a diagnosis: PLS.
However, the neurologist repeats the EMG: now there are some abnormalities. There is no acute denervation, but there is some evidence of chronic denervation (decreased recruitment), although bulbar muscles are still completely spared and normal. My diagnosis is changed from PLS to UMN-dominant ALS.
Now after an unusually long time, I have been diagnosed. I have had such a strange journey that I do not know how to feel: will my LMN signs start to progress together, all at once? Or will I stay on a slow LMN progression and relatively rapid UMN progression? I now walk with two supports, due to a very poor balance on my left leg. I have not lost weight and there is no atrophy whatsoever, at least not evident to my neurologist. It is unclear if I have lost strength or if it is just a consequence of extreme spasticity. Speech, swallowing and breathing completely fine, still.
I look forward to meeting all of you, to discuss issues related to ALS and beyond, to benefit from and contribute to this nurturing, loving, and wonderful community.
Very pleased to meet you,
B. Kafka
I have been a longtime lurker. I have been tempted to ask questions, but ultimately I decided to wait. And I waited for a long time. Having been finally diagnosed, I will let you know how everything began.
In the spring of 2016, I started noticing some problems with my left hand. I did not give them much attention. I thought it was just a pinched nerve and ignored it. It was just more rigidity than usual, but I could still perform the same movements with more time, and with a fine right hand it was easy to make up for my left hand problems.
It was only a year after, around March 2017, that I had a significant fall. I realized that I was dropping the left foot and I would fall easily in uneven terrain. I just thought it was some precocious aging (I was 62) but my family insisted I see a doctor. So I had my first appointment with a neurologist on April 2017, approximately a year after symptom onset.
The neurologist gave me a diagnosis: Parkinsonism! Perhaps atypical, but Parkinson's nevertheless. He gave me Sinemet and told me that all was well.
Sinemet made everything worse. My head was giddy and I was finding no relief. I went for a second neurologist and he confirmed the diagnosis (Parkinsonism with very pronounced rigidity, as he said). Strength test was normal.
On June 2017, it became clear that Sinemet was not working at all. A third neurologist gave a more precise diagnosis (Multi-Systems Atrophy). It is a serious disease, with a life expectancy of 8 years. It fit with my extreme rigidity and my reaction against Sinemet, but I did not have hypotension, which is the landmark symbol.
Finally, on September 2017 a new neurologist suggested I undergo imaging testing. Surprise: Parkinson's was no longer a possibility! It was a shock, but it made sense. The neurologist asks me to do an EMG. I have my EMG in November 2017: everything clean, completely.
At this point, I go through a ridiculous amount of tests. I have lost track of all of them. My symptoms progress: I am much more rigid on my leg and my hand, with affectation on my other two limbs. Clear hyperreflexia and hypertonia. The neurologist ventures a diagnosis: PLS.
However, the neurologist repeats the EMG: now there are some abnormalities. There is no acute denervation, but there is some evidence of chronic denervation (decreased recruitment), although bulbar muscles are still completely spared and normal. My diagnosis is changed from PLS to UMN-dominant ALS.
Now after an unusually long time, I have been diagnosed. I have had such a strange journey that I do not know how to feel: will my LMN signs start to progress together, all at once? Or will I stay on a slow LMN progression and relatively rapid UMN progression? I now walk with two supports, due to a very poor balance on my left leg. I have not lost weight and there is no atrophy whatsoever, at least not evident to my neurologist. It is unclear if I have lost strength or if it is just a consequence of extreme spasticity. Speech, swallowing and breathing completely fine, still.
I look forward to meeting all of you, to discuss issues related to ALS and beyond, to benefit from and contribute to this nurturing, loving, and wonderful community.
Very pleased to meet you,
B. Kafka
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