Hi Vera-
You've been a member of this forum and posting about your concerns about ALS for over 4 years now. Each time people have stated, based on the information you've posted, that it doesn't sound like ALS. That's not to say there is nothing wrong, only that it does not fit into the constellation of symptoms that normally indicates ALS. There are many conditions out there that are serious, life affecting and cause all sorts of uncomfortable life limiting symptoms. Perhaps you have the great misfortune of having one of those and you will have to continue working with your doctors to figure out what is going on. It is beyond the abilities of strangers on the internet who come to a forum specifically to receive and provide support to those with ALS to help you with this though.
It's really not clear what it is that you are looking for from the folks here on the forum. At first it seemed like maybe you were hoping to be reassured it was not ALS, which is something that the people here tried to do for you for years now. But, as time has gone on, it appears as though you are looking for people to agree with you that you have ALS despite your test results, your reported symptoms, and the professional experience of the specialists you have seen all pointing in some other direction. It is clearly frustrating for you (and you have a right to be!), and frustrating for the folk here, as continuing to focus on ALS may mean you are not able to hear what the doctors are telling you and are unable to seek the correct type of medical care as a result.
Please understand there is literally nothing the folk here can do for you in your search for diagnosis except empathize with your situation- but that can only go so far. Not because we don't care, but because we simply can't provide you the complex medical help you need. We have no access to your medical records, we are only able to speak about our experience as it relates to Motor Neuron Disease, and we have provided you many many replies and pieces of advice about what to ask for in your appointments, etc over the last 4 years. What specifically is it that you need from the folks here? You are receiving care from the people who can actually provide you medical attention and follow up and who can refer you to the appropriate medical practitioner based on their clinical findings. The people here sure can't do that for you. An internist is an excellent person to see, and can definitely provide you with information about what they observe and where they think this will take you next. But you MUST speak with them and not depend on folks who simply can't provide you that kind of care.