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BertS

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I haven't posted for awhile because Sara and myself have been waiting to see the neuro again. We went last week and the good news is she certainly doesn't have ALS.
Her blood test came back with slightly elevated muscle enzymes. The doc didn't specify which so I don't know if he was referring to CK or what. While this rules out the worst, it still leaves open alot of uncertainty. On one side, this could be a treatable autoimmune disorder, on the other it could be untreatable MD. She has no history of MD in her family but the neuro said in rare cases spontaneous mutations do occur. She had an EMG today and we have to go back on Monday for the results.

Of coarse the cycle has just started over again, since the neuro said the EMG may not be conclusive. If it isn't, she will have a muscle biopsy, which also may be inconclusive.

I am very thankful that she doesn't have ALS though, and I would really like to thank everyone on this board who has given us advice. God bless and good luck to you all.
 

Al

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Thanks for the update Bert. Good luck on Monday and let us know how it goes if you don't mind.
AL.
 

Icanmanz

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Bert, great news! No Als! Prayers your way!

Irma
 

BertS

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An update but not much of one.

The neuro said he has never seen an EMG like Sara's. He said the results definately weren't normal, but they are inconsistent with ALS, MD, mysostis (sp?), or anything else for that matter. He said his best guess would be a slow form of spinal muscular atrophy, but he said that he was just guessing. He referred us to his friend at UVA who he says was trained at the Mayo clinic. From what I have read, her symptoms aren't really consistent with adult onset SMA. She also has pain in her quads and swelling around her ankles, which the neuro said aren't features of SMA either, they are more inline with autoimmune inflammation disorders. So again, we are left to wait with no real answers. We were told we probably won't be able to get an appointment at UVA until Januaury at best.
 

CindyM

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Oh, I was hoping we were out of the woods on this one. Let's hope it truns out to be something treatable and let's pray they find out soon what it is. Cindy
 

BertS

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Thank you for your prayers, I'll keep all of you in mine as well.

It's funny how we go through life thinking such things aren't real. We think they are just some distant tragedy, something we see on TLC. We think to ourselves...how sad but it still doesn't seem real until it hits home.
 
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