I can understand and share with your frustrations. I finally got some interest after receiving MRIs for my back. Sence having MRIs that revealed what appeared to be muscular atrophy I have been referred to a neurologist. He ran extensive blood test and has preform an electromyography exam with some unexpected results that I do not understand for now. I am presently awaiting results from gene testing, Meanwhile I pray that you can the right referrals and answers that will result in some successful treatments,

My answer may not be applicable because my spinal muscle atrophy has not been decisively diagnosed as SMA. However, for what it is worth I did develop what was assumed to be bursitis in my shoulders during my twenties and in my hips during my forties Both my shoulders and hips have been a problematic from the time of the onset.

I have not been diagnosed with SMA, nobody seems to listen. I recently had rotator cuff surgery. My tendons were fully torn. I did not injure it either. Just happened over time. 6mo out of surgery & 3 & 1/2 months of rehab. Now my shoulder is hurting alot again. Both arms & neck with alot of pain. Leg, knee & hip pain. I lost 20lbs in the beginning. Lost most muscle in arms. Losing meat in legs too. Stomach, digestive problems. Do you think this could be SMA. My Sister is having muscle neck problems. She can't hold her head up. I've had it trying to tell drs.