You won't find anyone better than Dr. Appel. He is blunt but I think he still has a good bedside manner. The visit will take 2 1/2 days, and you will see him every morning. A resident will call a day or two before the appointment to go over all of your symptoms. Then you will probably see that same resident first thing at the appointment. He/she will brief Dr. Appel on everything (and there will be a slew of medical students following behind him), but listen carefully to make sure that everything is accurate. Feel free to jump in if you hear something that isn't correct or needs clarification. Then Dr. Appel will tell you what they will be looking for--not just ALS but other diseases that might be a possibility--and the goal during the next couple of days will be to rule out anything else. You will meet with a pulmonologist, a respiratory therapist who will perform an FVC test, therapists (physical, occupational, and speech) who will also perform diagnostic exams, and possibly a neuropsychologist. There might be others as well, depending on what all is being considered and how far along your progression is. Oh, and you'll have a new nerve conduction test and EMG. Be sure to take any test results that you already have, including MRI scans (the actual prints), biopsy slides, spinal tap results, etc. This will save you some time. You might also be referred to an overnight sleep lab to be assessed for bi-pap. You can do this on one of the nights of your visit down there.
They will be thorough, and they will listen to you. He is respectful and sensitive to the concerns of the patient, but like I said, he is rather blunt (more "East Coast" than "Southern," if you know what I mean--and I don't mean this negatively). He didn't try to predict how much time my mom has left. In fact, he carries around a little card that says "Only God Knows," which is his motto. He said that statistics can tell you generally what to expect, but that doesn't tell you what will happen to an individual--there are so many variables.
Other tips: Be sure to get there early. The registration process is a bit confusing--it's downstairs in a different part of the building from the work-up unit, and there isn't a real line to stand in. You'll see lots of other people with similar symptoms. Not all of them are ALS patients. Some have MG, MS, and a host of other diseases. Some will be on oxygen, some will be in wheelchairs, and the first day can seem a bit bleak--it was like catching a glimpse of an alternate universe. Dr. Appel's assistant is his wife, and she is really nice. So is Ella, who will schedule your appointment. His students worship him, and he is indeed brilliant. He likes to wear fun bowties. If you are diagnosed with a motor neuron disease, you will be able to go back for free follow-up visits every three months, and they will track your symptoms to help you manage the disease progression. They are doing a ton of research down there, and it's great that you get to see him. You will learn more about your body during that visit than in months of appointments with other doctors. Educate yourself in advance, write down your questions so that you don't forget anything, and don't be intimidated by the process. I would trust his diagnosis--he sees these diseases all the time--but if you have any doubts, he will address those. Just be sure to speak up, and it would be best to go with a family member or close friend who can take notes throughout the day. Oh, and be prepared for lots of down time between specialists. I think there was a TV in our room, but you might want to take a book or something as well.
If you have ALS, you will also meet with a Muscular Dystrophy Association representative at the end, and this will help you adjust to life after the diagnosis. They will give you a handbook that is clearly written for the lay-person, and you will be aware of the latest treatment options that are available. The Methodist ALS clinic is comprehensive, supportive, and aggressive in treating patients. Dr. Appel won't stand over your bedside crying with you, but he will be honest and not beat around the bush. This might be off-putting to some people, and his bluntness can catch people off-guard. He'll give you a list of vitamins and other supplements that he recommends, and then (like I said already) he will encourage you to come back down for follow-up appointments to help you track the progression of your disease.
After you leave the hospital...take a few days to process the news if it's bad, then start reading that manual. Think about whether you will want to be vented, get a PEG tube, etc. If the pulmonologist recommends bi-pap, definitely do that at night. They believe that if bi-pap is initiated early in the disease progression, it can extend your life, and they are currently doing research on this topic. Then after everything has sunk in, do something that you have always wanted to do. If you can travel, take a trip to an exotic location, or find something that is meaningful for you to do while you can. Oh, and eat lots of great food...in fact, eat *only* good food. Live each day to the fullest, and remember Dr. Appel's motto: "Only God Knows."