Well, my doctor did a sonogram on my legs at first cause that's where I'm weakest. She found white patches on my muscles and sent me to a neurologist who sent me for nerve testing (pretty painful smh). Then I was sent for a patch test. After that is when the neurologist diagnosed me with Pompe Disease, which is a very rare form of muscular dystrophy. I was born with it but the onset was only after I lost over 200 lbs smh Good luck!
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.
Share
Copy Link
Copied
Join the Alike community
Discover your Alikeness™ with people who are on the same journey, gain wisdom and get emotional relief in a secure & anonymous space.
Shira
316d
How do you reach a diagnosis for a muscular dystrophy when your mutation is the first one documented?
There’s a first for everything but I’m feeling really lost. Without any data to go off of how do I find out what my diagnosis is?
0
3
Share
Muscular Dystrophies (MD) & Other Myopathies
Anne8769
316d
1
1ofmany
300d
0
1ofmany
300d
0
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision