Please pardon this lengthy post but I'm about to go out of my mind. I have had for years burning pain between my shoulder blades. Approximately 19 months ago, I noticed that I could not do a bicep curl holding more than 2 lbs in my left hand. June 2009, I went to the orthopaedic doc and explained that in addition to this concern, I had burning pain that ran into my shoulder blades, along the back of my arm and into my forearm. He definitely noticed arm weakness and slight atrophy of the forearm on the left when I flexed. He recommended an MRI and a visit to a neurologist. The neurologist did an EMG and Nerve Conduction Study. Without my consent, he also did a gene test. Low and behold, he found a gene mutation ANG - autosomal dominant which supposedly is a marker for ALS. He had a copy of my MRI results that showed a very bad neck problem - lots of bulging discs, formania (?) across the discs and touching the cord. I was also diagnosed with cervical spinal stenosis (from C-2 to the T-1). After the EMG, the neurologist kept saying that he couldn't diagnose me with ALS but he wasn't sure. He said that if I get "this neck thing" figured out, that could be all of it. However, on my EMG report, he said the results were indicative of a motor neuron disease. When my husband questioned him, he told him that he wasn't sure of ALS and that I am not demonstrating anything that resembles a typical ALS diagnosis. Yet, he stated that my EMG was indicative of a motor neuron disease. I went to an ALS clinic and the occupational therapist stated that his assessment was not consistent with an ALS diagnosis. The doctor indicated that I had "some things" that caused moderate concern - hyperflexia and arm weakness. However, she said that every other muscle group in my body that she tested was strong. She told me to return in two months.
A month and a half later, I am back to the orthopaedic doctor . He indicates that this is strictly a neck issue and in no way is consistent with ALS. He advises me not to return to the ALS clinic and refers me to a neurosurgeon to address it as a cervical neck issue. The neurosurgeon indicated that if there was not a statement of ALS on the report, he would have treated it as a cervical spinal stenosis issue and no more. He also indicated that my neck was "so messed up" that even with surgery, he wasn't sure he could fix it all. However....here we go again. He wants me to have another EMG with the leading authority of ALS in the nation. I am scared to death. Ii have not had any progression of this weakness anywhere else in my body. He did a jaw reflex test and it was normal. He tested my balance and my muscle strength. All was fine except the left side. Meanwhile, I am a mess emotionally. I am not getting progressively weak. It's been 19 months with this and I actually got some muscle strength back in the left arm. I can now do a bicep curl holding 2 pounds. The strength comes and goes. The burning pain that started down my left arm, is now moving to my right arm. Can someone offer some advice or support??? I am not sure what I should do now.
Thanks for your patience with this!