Well, after the responses to my Money Matters topic, I decided to go ahead and apply for SSDI. It was a two month process. They kept asking for bits and pieces of info (every week or so I'd get a request for something - often info I had already provided in the online application) and they asked me for medical records release forms twice (even though I had already filled out the form online). My issue is mainly fatigue from CMT and associated symptoms and complications. Gathering up the necessary documentation and dates, and etc, etc, etc... was like a full-time job for those months (and certainly fatiguing in and of itself)!
Eventually, Social Security told me I needed to see an IMA Disability Specialist who would give me an examination. IMA is a group that's contracted by Social Security to do medical examinations. I actually had two exams. One was psychological (since I also listed anxiety and depression in my initial application) and the other was physical.
The physical exam was degrading to say the least. I am not sure how knowledgeable the doctor was about CMT (she was very tight lipped about her expertise) but she didn't appear to know a whole lot about it. At first she seemed nice but as the exam progressed it was obvious that she was biased. She seemed to think I was faking most of the tests and that, to me, was infuriating, depressing, and totally discouraging.
She did the standard strength and reflex tests that all neurologists do. At one point she did the test where you spread your fingers and try to resist as they try to close your fingers together. After having done one hand she said to me (her exact words): "Oh, come on. Are you even trying!?" I was very angry about this response but I calmly and quietly said: "This is the same test they gave me at the Stanford CMT Center of Excellence, but that certainly wasn't the same response I got from the doctor there." To this she apologized and told me that they see a lot of people who are "faking" or trying to make it worse than it seems. I told her I had no reason to do that.
She watched me like a hawk as I removed my shoes and AFOs and socks. I am thin and look athletic and fit - I truly think she was prejudiced by my appearance at the start. She measured the circumference of my calf. She did reflex tests on my knees. She had me try to tie a bow in a string (I was proud that I did a pretty good job). She checked the mobility of my limbs (legs and arms) and was going to ask me to walk without AFOs but I didn't want to do that because I'm quite unstable barefooted - she didn't press the point. She looked at my spine for curvature. She listened to my stomach. I can't fathom how any of this could demonstrate the crippling fatigue I deal with daily!
I walked out of that clinic feeling demoralized, humiliated, and even more depressed than I was at having to apply for SSDI in the first place. It was terrible. In late August I got the denial letter from Social Security.
I'm pretty sure I won't be getting SSDI in the near future (or possibly at all). I am going to appeal and have enlisted the aid of attorney's to do so. The lawyers want a statement of disability from my treating physician but since my wife and I moved cross country in February, I haven't established a relationship with any new doctors yet. I decided to ask for the statement from the doctor at Stanford but last time she saw me was November (almost a year ago).
Really, I don't hold out much hope for SSDI anymore and I would totally understand if my last neurologist won't write the statement - after all, I haven't seen her in quite some time. I guess I likely made a lot of mis-steps in the application process and not having a current doctor nor taking a bucket-load of medications probably counted against me. It's really quite sad. CMT is a progressive and incurable disease. I am certainly not getting better and there is no need to spend on expensive doctor visits every month (especially if you're already using all the "aids" available) so I only go yearly or every two years. All medications are palliative and I don't like drugs and their side-effects in general so I work very hard not to take them (though I have in the past, just not in the last couple years). It seems unfair to me if these things indeed counted against me.
Anyway, guess I was just looking for a shoulder to cry on since I'm feeling pretty sorry for myself these days. I certainly don't want to go through all this again. It was disheartening to say the least.