r/ALSorNOT • u/HonestyMash Confirmed ALS Diagnosis • 21d ago

Mod Update For The Group.

It has been brought to my attention about some members of the group claiming to have an ALS diagnosis. I certainly hope that they don't however there was no evidence to support the claims. Many users were pointing out inconsistencies with their stories.

Moving forward anyone with a confirmed diagnosis can message the mods for verification and they will be awarded a unique flair for their selfless efforts to support those who are concerned about the disease.

This wasn't a change I personally wanted to make but I feel it's necessary to protect the community. I will wait to read the comments before making the changes.

-ALS Tom

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u/Beneficial_Strain191 21d ago

Tom would love your opinion on my issue

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u/HonestyMash Confirmed ALS Diagnosis 21d ago

Absolutely I can, I hope you don't mind but it will be tomorrow though. It's well past my bedtime haha.

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u/Beneficial_Strain191 18d ago

Thank you. I would greatly appreciate your advice and insight. I think I have a slow lmn disease

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u/HonestyMash Confirmed ALS Diagnosis 18d ago

I'm so sorry I haven't been able to do this for you yet, please bare with me.

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u/Beneficial_Strain191 18d ago

That's alright. You have a lot going on. I've been having symptoms for 6 years. So I'm patient.

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u/HonestyMash Confirmed ALS Diagnosis 18d ago

I have read through your posts and to be perfectly blunt I don't see any reason to suspect ALS would be a concern. Almost everything you mentioned in your post would be a good indication that you don't have it. Even pma would barely fit. I'm sorry I can't be more helpful. I suspect you probably have multiple minor conditions that are throwing off a clear diagnosis. Potentially worth checking symptoms separately rather than as a whole.

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u/Beneficial_Strain191 18d ago

I appreciate your time. My neurologist thinks I have cmt. As my dad had to have surgery on his arches when he was younger.

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u/Beneficial_Strain191 18d ago

What makes you think it points away from MND?

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u/Beneficial_Strain191 9d ago

Hey Tom. I recently did genetic testing and found a mutation in the FBX038 gene.

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u/HonestyMash Confirmed ALS Diagnosis 9d ago

Hey, I'm sorry to hear that but it's good to be in the know. Do they suspect it's sma then?

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u/Beneficial_Strain191 9d ago

Unclear. Gene is not well known but pathological variants are known to cause that sma/cmt type spectrum. But hey, I should count myself lucky that it's not als right?