You will find that you are not alone, as your story is one that most of the forums
dealing with MS, see everyday.
Most of us have been through what you are going through, as have many that were waiting for a DX and finally got one that wasn't MS.
Unfortunately Megan, there is no easy, straightforward answer to the dilemma. Because of the nature of autoimmune diseases, they are difficult to pin down. Some doctors and other medical community members are just ignorant of the ongoing facts of MS, some are gun shy to make a decision because "MS" seems to be the "in" disease for some people. My Neuros have told me more than once, how people come in for a first visit and on the second bring papers for disability, or they come in once and then never come back, while telling their employers, friends and family that they have MS. Other medical staff members are knowledgeable, sympathetic, and eager to help prove or disprove, but you may feel they are not doing enough, while they are looking for some current medical criteria that will verify your symptoms.
The other problem is the disease itself. It is so unpredictable. For some it may come once and disappear for years or even a lifetime(but even when gone, it is not cured...just laying dorment for awhile. For there is no cure, nor does it ever leave once triggered) and for others it comes like a run away freight train destroying everything in its path.
There are only so many tools a doctor has at his disposal to prove or disprove, this disease. People often appear to have MS, but end up with Lupus, or Lyme or some other disease that has the same symptoms. One Neuro told me that many people think that MS covers every autoimmune disease or brain related problem there is. Nothing is further from the truth.
I will bore you a bit longer, and tell you that I have been where you are now. Frustration was number one with me and patience was not a word I wanted to hear or deal with.
I know this not what you want to hear, but there are some members of this forum and others that have been waiting for a year or two or even more, dealing with symptoms and discomfort, and yet......STILL have no answers.
I was told by my first encounter with a neuro, that it was my blood pressure pills. He didn't even look at the MRI. The second was a bit better, but insisted that physical therapy would take care of my problems. I still was not diagnosed. I finally went to a neuro that thought the others were idiots, put me through a gambit of tests, and even when she was absolutely sure I had MS, she told me she wanted another opinion. Went to her suggested other doctor and was told that there was no doubt. That's when I told them.........I didn't have it. There had to be something else. Finally after almost 7 months of tests, doctors and more doctors and more tests........I have MS.
Many things will be suggested to you but I will tell you from recent experience that
knowledge of what MS is, what they look for, and asking on this forum and others is
one key, while another is not to be shy with medical people. Remember that it is your body; you do know what it is trying to tell you, and if people will not listen.....find others. Ask you’re local MS society, foundation, or whatever is available in your city about who they recommend. They keep lists of MS specialists.
Be open minded. It could be any number of diseases. Most of which are as difficult as MS to dx. If you have to wait for an answer or tests or whatever, ask about medicine for the symptoms. There is no reason you cannot feel better, or relieve some of your anxiety by getting help with the symptoms. And you don't need a neuro, or an MS specialist to help you with your symptoms. Your Family GP is as good as any.
Remember that we all vent, ask questions, and respect each other on this forum and it is made a HUGE difference in my life. I was told early on by some of the members of this very forum that everybody will tell you how bad they feel for you or that they understand... from friends, medical people, to your closest family members.......but the truth is, they haven't got a clue and really will never understand.
I am still in denial, still angry, and still determined to not give into this disease as I would any major illness. I wish you the best Megan.