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ICD-10 Codes for SBMA
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Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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What ICD-10 codes are used to document SBMA?

I quick search of the ICD-10 lookup sites doesn't turn up anything.

With all the "flexibility" ICD-10 offers I'd guess SBMA will be coded in a wide variety of codes, with the resulting confusion every time we go to see someone about symptoms that are clearly caused by SBMA.

Perhaps our medical support team could look into this and give use some guidance?


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email:rheitzman at gmail
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Bob, I do not have a clue. I'll check and see what I can find out for you. Dr. Fischbeck came back with the following explanation:

"Yes, I looked into this a year or two ago, and I noticed that KD does not have a specific diagnostic code in the new medical coding system, ICD-10. This was also the case for ICD-9. I’m not an expert on this, but it seems that KD would fall under one or more of the following categories:

  • G12: Spinal muscular atrophy and related syndromes
  • G12.1 Other spinal muscular atrophy
  • G12.2 Motor neuron disease
  • § G12.20 Motor neuron disease, unspecified
  • § G12.29 Other motor neuron disease
  • G12.8 Other spinal muscular atrophies and related syndromes
  • G12.9 Spinal muscular atrophy, unspecified


These codes are used for medical billing purposes."

This message has been edited. Last edited by: Bruce,
Registered: 08-02-2009
Posts: 206
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At my doctor's office, I noticed the medical records system uses the term "Spinal muscular atrophy" but I am not sure what the numeric code is.

That choice seems misleading to me because there is a completely different disorder called Spinal Muscular Atrophy or SMA, and it is not the same as Kennedy's Disease or SBMA.

One would think that with current computer technology it'd be possible to create a name and code for each disease, even the rare ones. But for some reason it's not done that way.
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 161
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Well, the ICD-10 looks like it will be a real mess that will only make things worse if its use is required. As a database person I can tell you that codes like these are are the garbage in the proverbial garage-in, garbage-out fame. Either you have a comprehensive set of codes or you have nothing worth using.

I think it would be a good idea to get some "expert" advice and then encourage the community to always suggest a SINGLE code for SBMA. Otherwise SBMA will be coded all over the place. G12.8 might be a good choice for symptoms.

However... The G codes seem like they would only be used before you had a diagnosis of SBMA. After that Q90-Q99 Chromosomal abnormalities, not elsewhere classified seems like a better fit as far as diagnoses goes. Maybe Q99.9? Q95.?

LOL _ just did a search on http://www.ninds.nih.gov/ for ICD-10 and it returned Asperger Syndrom! Pretty close I'd say! Smiler Maybe they will also list ICD-10 as a secondary cause for Tourette syndrome?

I left a suggestion that they add ICD-10 codes to each of their disorders fact sheets.


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email:rheitzman at gmail
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Kennedy's Disease Association
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Tel: 1-855-532-7762
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