Old 01-12-2018, 06:43 PM #1 (permalink)
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Default Ataxia/tremor in PLS?

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.
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Old 01-14-2018, 08:21 PM #2 (permalink)
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Default Re: Ataxia/tremor in PLS?

Fiona,

I am LMN-dominant and haven’t experienced any of the symptoms you note. However, no one else has responded to you, so that piqued my curiosity to look things up.

I may be way off-base here even mentioning this, but look up a condition called spinal cerebellar ataxia type 1 (SCA-1). It has a lot of features of PLS plus ataxia. Some people can have tremor, but the ataxia is more the hallmark. Many cases are familial, but some arise from spontaneous mutations. Just curious if your neurologist mentioned SCA-1 as being in the differential diagnosis of your symptoms.
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Old 01-14-2018, 09:52 PM #3 (permalink)
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Default Re: Ataxia/tremor in PLS?

Thank you, Karen. I appreciate the feedback- it prompted me to go back through my wee binder of medical records to see. I didn't really expect a huge response to this, given the PLS subforum is relatively quiet.

I had really extensive testing when I started running the neurology gauntlet. One of them was a neurogeneticist who ordered a great many tests- which included a panel of SCA indicators-1,2,3,6 and 7, Freidrich's Ataxia, paraneoplastic, anti GAD plus leukodystrophy and HSP and a variety of others. She was incredibly thorough, which I didn't appreciate enough at the time.

The hereditary stuff terrified me more than anything due to having a son I could pass something on to. My last appt with her was basically her telling me I belonged at the ALS clinic because all the blood tests came back with a big "nope" and I just didn't have a pattern or "feel" she was familiar with.

I have seen mention elsewhere about PLS and ataxia/trembling- just nothing current. I have a mild case of impostor syndrome, so anything out of the norm causes me to doubt the diagnosis of PLS. However, I have been unsuccessful in convincing my ALS/MND neurologist of this. And as she's the one who noted the ataxia and tremors in the report, yet still says "probable PLS", I'll have to continue believing her. I am, it appears, an odd mix of completely typical PLS symptoms and pattern, plus some weird extra symptoms.

Thanks again-
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Old 01-15-2018, 12:49 AM #4 (permalink)
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Default Re: Ataxia/tremor in PLS?

It’s good to know your doc is so thorough and that SCA and other genetic oddities have been ruled out. She’s right that “textbook” descriptions often don’t apply to real patients. Good luck in sorting through your symptoms.
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Old 01-15-2018, 11:45 AM #5 (permalink)
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Default Re: Ataxia/tremor in PLS?

Seems to me that tremors/Parkinson-like symptoms have been mentioned by members of the PLS Facebook group. Maybe post your question there? I personally don't have any tremors. But, I do have fasciculations.

From wiki, ataxia is " lack of voluntary coordination of muscle movements". Wouldn't we all have that?
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Old 01-15-2018, 12:53 PM #6 (permalink)
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Default Re: Ataxia/tremor in PLS?

Gorby, to clarify— “ataxia” specifically refers to a group of medical conditions resulting from damage to or degeneration of the cerebellum. The cerebellum is the part of the brain that deals with coordination. It is not typically involved in ALS, but ALS would have in common with the ataxias loss of coordination. In ALS, however, loss of coordination is due to weakness and also involvement of the lateral corticospinal tracts. This latter involvement is the “L” in ALS and in PLS.

The ataxia resulting from cerebellar degeneration looks different from incoordination in ALS. An example is that people with ataxia will reach for something, and often reach past what they are aiming for. This causes their hand to wobble as they try to touch the object they’re reaching for.

The National Ataxia Foundation has a good website describing ataxia and the conditions usually associated with it.
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Old 01-15-2018, 02:37 PM #7 (permalink)
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Default Re: Ataxia/tremor in PLS?

Hi Fiona,

I've never heard any of my neurologists say the words Ataxia or tremor but I wouldn't be surprised if I have these symptoms with all the weird movements I feel, from twitching, clonus, shakiness, etc... Attaching a study on PLS that you may not have read. Mary Floeter works at NIH and is an expert on PLS. I've never attached anything here so hope it works..

Take careKathy
Attached Files
File Type: pdf -Floeter PLS.pdf (528.0 KB, 18 views)
File Type: pdf -Progression in PLS - Floeter- 2009.pdf (775.1 KB, 12 views)
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Old 01-15-2018, 05:05 PM #8 (permalink)
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Default Re: Ataxia/tremor in PLS?

Thank you all for the replies.

Kathy, thanks for attaching those research papers. I would dearly love to visit with a specialist in PLS. I gather Dr Floeter is an excellent neurologist- I've seen her name in all sorts of places and it's been universally positive in reference.

Karen, thanks for the clear explanation. I was trying to figure out the best way to describe the difference between spasticity and ataxia based on personal experience. Spasticity is more of a restriction of movement for me, ataxia is an aiming problem.
It was the touch your nose, touch examiner's finger (super official med terminology, I know) that threw me this time. I was all over the place.

Lori- I've seen mention elsewhere too. There are even some folks with HSP/PLS taking drugs that are used for Parkinsonism with moderate success. I often wonder if diagnosis of ataxia/spasticity depends on who is examining you.

Thanks all
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