Diagnosed pma

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araksya1957

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I go to cedar Sinai in 2018 , doctor looked peepers,checked my reflexes,said I don't see als, the same year in February I go USC research center dr beuduin, did emg , first said hereditary distal motor neuropathy ,but test was negative, then said some kind of being lower motor neuropathy.
 

lgelb

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A benign LMN neuropathy sounds pretty good compared to most of what we see here. I'd run with that, unless there emerges a reason to think otherwise.
 

araksya1957

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Thanks for answering me , l was wonderig, neurologist will know by looking emg if there something else besides als, and nerve condaction test will help too. I think in my emg if there something else they will see i will know.l see 5 or 6 neurologist, one is leading neuromuscular Dr in USC als research center dr beydoun, he said no als but l don't know what, maybe bening lower motor neuron disease. In cedar Sinai als center dr check papers and reflexes said l dont see als but l don't know what, In kaiser neuromuscular Dr 2015 said als but in 2018 said l dont know what.l don't know who believe, that's why l don't want go to any doctor.and I think i have pma, because my walking became wors in 7 years, no other body parts but in lumbar region simptom , only legs weakneses ,became wors , in 2014 _15 i walk wihout can , in 2016 with can only outside, 2017,18 with can inside too, and late in 2018 until now with walker inside and outside. What you think ,thanks for reading my post.
 

Nikki J

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I think you need to pick one neuromuscular doctor and if you are not now given a diagnosis ask if you can be followed by that person. It sounds like you have gone to multiple places and complicated neurological diagnoses sometimes need to made after observing the patient over time
 

EricInLA

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I agree with Nikki. You need to stick with one neuromuscular specialist. Cedars-Sinai is very good, but whoever it is, just go there every so often so they can see how you progress over time. With a complicated case like yours, it can be difficult to figure it out with just one visit.
 

araksya1957

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PALS
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Hello everybody. Somebody is familiar with flail leg sindrom. I think my is flail leg sindrom only my symptoms begin proximal and very simmetricaly, but flail leg sindrom that's is type of p ma and very rare, and begin distal leg weakneses . Pma begin not simmetricaly, one leg then go to second leg.in 31 August I have appointmen I will ask Dr about flail leg sindrom. That son from is motor neuron disease ,don't have upper motor sign, and very very rare.
 

ShiftKicker

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Hi araksya-

Are you hoping to have specific questions answered about your condition? It's not quite clear what you are looking for.
 

araksya1957

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Thanks for answering, 2018 I have changed diagnosis from als to pma, but they not sure .pma begins first one leg then second , not simmetricaly like my simptoms. Only one neurologist said that could be flail leg sindrom, that is very very rare type of pma. I was wondering is somebody familiar with that sindrom.
 

lgelb

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We have answered you as much as we can for now. Please do not post again unless you have new information, such as further testing or clinical findings.

Best,
Laurie
 
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