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Kerbear

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Sep 11, 2015
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Learn about ALS
Country
Uni
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Georgia
City
jackson
I thought I would post this here in hopes of helping others who have either been told they possibly have als or those who believe they do.

I was told I had possible als due to four abnormal emg and clinical exams, however there were always some symptoms that did not add up and I have very little atrophy, with the advice and help of the members on this site I went to an als clinic for a 2nd opinion with the help of my local mda office.

It has been the best decision I have ever made. I finally had a muscle biopsy which shows metabolic myopathy, however the dr also found two other contributors to my condition

Parathyroid disease and an unstable arachnoid cyst... yes three things that equal a very sick person.

Nothing will change the myopathy however there are possible fixes for the other problems.

Fight for an answer go to the dr and ask questions it takes courage and strength to get to the bottom of things sometimes. There really really are a ton of illness that can look very much like als and as a matter of fact each of the three problems I have are even more rare than als.

Hope this helps someone if you have weakness twitching cramping brain fog trouble swallowing etc etc get your parathyroid checked low calcium which I barely have any in my blood will make you very very sick.
 
Thank you for posting this and for giving an update. Wishing you the best as you get treatment. You certainly had a rocky road to diagnosis
 
Thank you for posting this. I think it is a reminder to many DIHALS that you may have things that need tending to, but the odds are slim indeed it is ALS in the mix - even when you are given a "might be" from a Doctor.
 
Great Advice! I'm very happy for you! Best of luck in your treatment.
 
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