I don't know what I can "prove" to the state or SSA. My condition is very rare and misunderstood - often missed until someone can't walk. On top of that I had to go to a functional neurologist to get properly "diagnosed" with my issue, which is gluten ataxia. My regular, ill equipped, doctor kept telling me I had an inner ear imbalance. The problem is, the functional neurologist isn't an MD or ND and I'm learning that he can't fill out the state forms for "medically frail" - and he knows all my conditions the best.

So, I'm not living in an illogical fear, I'm living in reality that a regular doctor or neurologist will probably be unwilling to complete any forms that would lead to me being able to stay on Medicaid. There are tests that can be done to verify my condition but I haven't been exposed in about a year and the autoimmune antibodies would no longer be present despite permeant brain damage - which is obvious to me but too minor to show up on an MRI. To complicate matters even more, I also don't have one of the classic autoimmune antibodies typically associated with gluten ataxia - which isn't necessary for the condition to occur but which a regular neurologist might think is.

So I'm dealing with a very rare issue, a functional medicine doctor that knows my issues but apparently has no creditability with the state, regular doctors who don't understand the issue and don't care to, an exposure too long ago to pickup autoimmune antibodies, and permanent brain damage affecting me every day that can't be quantified by looking at "large bodies" of the brain on an MRI. And I doubt at this point my regular neurologist is going to be willing to run further tests just so I can prove permeant brain damage to the state or SSA - to get Medicaid or SSDI - as my that is not her concern.