Old 08-23-2018, 12:37 PM #1 (permalink)
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Default Difference between diagnoses

Friend, 61 yo, thought that she had als. after examination where everything was ok, she is suffering for a 4 years and finally she got diagnose: code g54.5 - neuralgic amiotrophy. she had all symptoms identical like me, but i'm "right side", she is left side". she doesn't use internet, so i am her source of information.
now i'm stucked!!!
can not find anything about that specific disease. als is code g12.2. (in eu it is known as mnd).
she is hardly waitting to see me, cause she didn't understand her neurologyst. island in a stream, that is who am i...
dont want to let her down.
anybody experienced? is it same?
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Old 08-23-2018, 12:50 PM #2 (permalink)
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Default Re: Difference between diagnoses

Does she have only upper limb symptoms? That is a code for parsonage Turner syndrome Does she have pain? One of my FALS friend got that diagnosis. Died in under a year. But if it is correct it is not fatal
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Old 08-23-2018, 01:01 PM #3 (permalink)
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Default Re: Difference between diagnoses

@nikki both, upper and lower. her gait is bad/limps and she suffers little bit more than me. no pain, no bulbar sign, no weight loss, she is getting weight, except "tongue fibrilations" (my neuro says for me "tongue fasciculations"). turner syndrome? there are 2 turners...
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Old 08-23-2018, 01:08 PM #4 (permalink)
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Default Re: Difference between diagnoses

No typo parsonage turner syndrome
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Old 08-23-2018, 02:36 PM #5 (permalink)
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Default Re: Difference between diagnoses

Jethro, Parsonage-Turner is an old label that is pretty synonymous with LMN-dominant ALS (what also sometimes and probably wrongly is called PMA) when applied to someone who has problems with both the upper and lower body. So basically a slower form of ALS that unfortunately generally ends the same way.

Best,
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Old 08-23-2018, 02:57 PM #6 (permalink)
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Default Re: Difference between diagnoses

https://rarediseases.org/rare-diseas...rner-syndrome/
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Old 08-23-2018, 03:59 PM #7 (permalink)
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Default Re: Difference between diagnoses

@nikki&laurie appreciate for helping, but i'm confused since you are point to opposing info.
@laurie : Parsonage-Turner is an old label that is pretty synonymous with LMN-dominant ALS (what also sometimes and probably wrongly is called PMA) when applied to someone who has problems with both the upper and lower body. So basically a slower form of ALS that unfortunately generally ends the same way.
@nikki (sellected from a link): Other nerves in the arm or even the leg can also be involved. The exact cause of PTS is unknown, but it is believed to be caused by an abnormality of the immune system (immune-mediated disorder). The severity of the disorder can vary widely from one individual to another due, in part, to the specific nerves involved. Affected individuals may recover without treatment, meaning that strength returns to the affected muscles and pain goes away. However, individuals may experience recurrent episodes. Some affected individuals may experience residual pain and potentially significant disability.
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Old 08-23-2018, 05:17 PM #8 (permalink)
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Default Re: Difference between diagnoses

Parsonage-Turner is not a motor neuron disease. Unlike MND, patients with PTS can improve.
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Old 08-23-2018, 06:22 PM #9 (permalink)
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Default Re: Difference between diagnoses

I think the confusion comes from the many uses of the label. The info that Nikki/Karen provided is the most up to date. Not all docs are [as up to date]. Because the onset resembles flail arm ALS, someone can progress past a PTS dx to ALS but I said that badly.

So if your friend is still getting worse after four years, I would be more suspicious that the doc is using it the old way. The reason for that is that literature suggests 89% of patients recovered within 3 years, 75% within 2 years, and 36% within the first year, because it is self-limiting. So progression after 4y would suggest a different dx entirely.

Key for her would be to know what her EMG showed. Can she get a copy?

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Old 08-24-2018, 08:14 AM #10 (permalink)
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Default Re: Difference between diagnoses

Hi jethro I will add a second link worth looking through .
https://www.orpha.net/consor/cgi-bin..._Search_Simple
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