When my husband went to Texas Neurology at Bailor in Dallas he was only seen by the neurologist and was given an EMG to confirm his original diagnosis. He was not seen by any other discipline in 6 weeks even though he had messaged his concerns. He felt like he was basically told "you have ALS, go home and get you things in order to die. ' We were in the process if him immigrating to Canada so I went down and picked him up. It took over a month to get that appointment, and I was not impressed with his after care.
Once in Canada her saw in one week what would be his primary care physician, who referred him to an excellent neurologist, that he saw a week later. Another EMG was done, and he also confirmed an atypical ALS, then referred him to a physiatrist to deal with his physiotherapy, splints and occupational therapy care. She called the very next morning and would see us in 3 days. He was seen that week in our home by an occupational therapist, and we had a call from the ALS society of BC, to arrange needed equipment, which was delivered to our house in 3 days. The ALS society is centered 300 miles from where we live so I was absolutely amazed. My husband did not have BC medical, but the ALS society covered the costs knowing this. They said that ALS knows no borders, so they didn't care. My husband was blown away by his care and the compassion that he was shown. He was starting to believe that he could live with ALS rather than die from it. The physiatrist gave us her own personal cell phone number, and calls regularly to see how we are doing. My husband us a US veteran, so has 100% coverage for his equipment, so when we want something that is not supplied or available through the ALS society we go to Seattle and they take care of it. The first time there he stayed for a week and saw a multidisciplinary team, and had everything from dental work, hearing tests, pulmonary function, etc done. The VA system closely resembles the Canadian health care system, except that his equipment is paid for.
It has been a lot of work, but we are blessed with the best of care and equipment, and it makes me angry and frustrated to hear what others are having to go through. Being in the medical profession is definitely an asset and I can't imagine how intimidating this all would be for those that are not, and that is not right.