[angell]

I'll try and be quick with the background info, but I believe it is germane. There is an MG related point - I promise.

Shortly after being diagnosed with MG, my PCP referred me to a psychiatrist believing that I had depression. In order to see the psychiatrist, the mental health provider required that I start seeing a therapist. The depression lifted quickly after realizing what it was. I never had depression before and so I didn't recognize the symptoms, or rather, I confused them with the MG which, of course, I also had never had before.

Despite the depression lifting, my disability attorney recommended that I continue to see the mental health providers in the event that they might diagnose something that could help in the disability case. It was not a complete shot in the dark, I have Asperger's Syndrome but the doctor who diagnosed me a million years ago had a private practice, retired many years ago and has since passed away.

My relationship with my mental health providers has been adversarial at best, but I am in a very rural area (in fact, I travel over 100 miles to converse with the psychiatrist via skype) and I have no alternatives. i.e. I cannot just get a different psychiatrist. Last month he referred me to a psychologist for testing, which both my attorney and I were hoping for in order for there to be documentation of the Aspergers and/or anything else. I met with the psychologist this past Wednesday, testing was on Thursday.

My subject of my IQ came up organically in a conversation with my therapist one day. He passed the information on to my psychiatrist - they work together and share information regularly. It's quite high. My psychiatrist, when he referred me for psych testing, asked for an IQ test to be given. I was uncomfortable with that for the following reason:

The results of the tests I took yesterday are going to my disability hearing. When I was shopping for a disability lawyer, I spoke to three different attorneys. Each one of them said that despite having a very good chance of receiving disability, I had two strikes against me. First, I was too young. Disability judges apparently are more lenient awarding disability to folks who are at least fifty-five. Fifty years old is doable they all agreed, but anything under fifty years old is a very tough sell. I was forty-seven when I applied, I'm fifty now and the hearing is expected some time in September so I've made a bit of progress there. The second strike was that I was too smart. Each of them basically said, that the smarter one is, the more likely it is that the judge will figure that you'll figure out a way to make it work without disability.

So, when I discovered that an IQ test was on the horizon, I told them that unless it was required for diagnostic reasons, I'd prefer not to have my IQ tested at this time. When pressed, I explained why. Long story short - the IQ test was a part of my testing yesterday. Okay, the MG related stuff is coming up next...

The psychologist asked me about my MG during Wednesday's intake and we discussed it at length. In fact, I had a swallow study scheduled after that appointment because I keep having food exit via my nose. Thursday morning I met with the person who administers the tests for the psychologist. Test number one is a fifteen minute long CPT test. For those unfamiliar, CPT stands for continuous performance task - a physical, continuous performance task. I tell her that I cannot do it. I'm instructed to do my best.

I push myself, then the spasms start at about five minutes and my hands is banging off the keyboard uncontrollably. At eight minutes tremors turn into convulsions - at this point the test is discontinued. I'm given a five minute break. Then I have to complete puzzles; my performance is timed. I can't make my fingers work. I am familiar with this test incidentally, I can do it in my sleep, but in my dreams, my hands work. I keep trying, but my face is melting off and I'm drooling on myself by this time. Appeals for a rescheduling are denied.

Next is something called chunking tests - lets rattle of lists of numbers and I repeat them back. I am so ready for this...not. But hey, test four was coming. Here's a pencil, start writing - oh and you're being timed. I can't hold the pencil. I'm using two hands trying to make my hands work and I'm writing like a kindergartner. Did I mention they score for accuracy, speed, and letter formation? In fact, test five, and six required me to write my answers as well.

Anyway, a good portion of these tests were part of the IQ test. It's fair to say that I scored abysmally. After six hours of testing though, I could care less, I was just grateful for it to be over...but then yesterday something dawned on me.

I was very far from my best yesterday. Taking an IQ test when one is in the state I described myself being in yesterday, does not yield results that are an accurate reflection of one's intelligence. But no problem - can't hurt my case, right? I mean, I did my level best under the circumstances and so - no harm, no foul.

Except my psychiatrist and therapist know why I didn't want to take the test in the first place. They have to conclude one of two things: I lied originally, or I manipulated the test by scoring low purposely. Either way, they are going to confront me on my score. Normally, with these two, I am assertive and a strong advocate for myself, but I am pretty much done with them. I have to continue seeing them for a period of time but I'm no longer going to try and work with them. Go in, do my time, go home.

I have, more or less, exactly zero interest in explaining the fiasco that was Thursday to them - it's behind me and I don't want to talk about it with them. That was my plan anyway, but then I started thinking about it. If I don't tell them about it, then when the results come back I'll either have some explaining to do then - or risk their notes painting me either a liar or as attempting some type of fraud. I really don't want to be portrayed that way to a disability judge trying to figure out if he can believe me or if I'm trying to game the system.

Suggestions?

P.S. I know that to some, this might appear to be looking for something to worry about. But the truth is, all my eggs are in the disability basket. If I am denied, I am out of options. It's been three years since I've become disabled, our savings are gone and my wife's doctor just told her that she can no longer work too. I have very little control in this, but if I end up getting denied because I handled something that was in my control poorly...well, not sure I could forgive myself for that.

[juliejayne]

Sorry if I misunderstand the problem... the system here is different. But is it not logical and perfectly explainable that having MG causes directly or indirectly al the problems that you had with the test. And thereby shows that you are disabled, because in a work environment you would become ineffective very quickly under similar stresses.

[angell]

Originally Posted by juliejayne

Sorry if I misunderstand the problem... the system here is different. But is it not logical and perfectly explainable that having MG causes directly or indirectly al the problems that you had with the test. And thereby shows that you are disabled, because in a work environment you would become ineffective very quickly under similar stresses.

I don't think you misunderstood the problem, but there wasn't a medical doctor present to identify the issues I was having. Perhaps after three years of denials, I am a bit jaded but I am concerned that the problems I had will be undocumented and/or dismissed - but my results on the tests will not be.

[mg_candi]

Hey - your write up of what happened to you was good. I know you don't want to explain it to them but this was aweful. Take this with you to the lawyer and Doc. Be transparent. You are not hiding anything. In fact, this is rediculous and they are actually hired from you, right? So they need to know to be your advocate and help advocate for others later. (Help them help you...)

This disease is different for everyone. It sounds like you have a few different things against you. Good luck.

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