Friday, November 9, 2007

Round 1 - Knocked Down

Saw the neuro today to get the disability paperwork completed. I took a briefcase full of data to document my long history of fatigue, including a chart that shows the decline in my productive work hours over the last 3.5 years. I had a book about "Fatigue in MS" with data on research results of various meds. I included a 3-page report documenting everything I've given up in my personal life just so that I can continue to work. I took my husband with me for support and to be a second set of ears. I had practiced speeches and tried to be prepared for any objections and how I would counter them. I felt like I was going to court.

Result: Appointment at 0900 and didn't get to see the nurse practitioner until 0940 (sounds familiar, Cheese?). She patiently reviewed all the data, took the ISBN number of the book so that she could get her own copy, and was surprised at how much I had put together. Then she ran out of the office to get the doctor. But he was busy and had another appointment so could I wait for a while because he wanted to talk to me? I was hungry and thirsty, but figured I could hang on for another hour. Unfortunately, the waiting room was now packed with four kids and a lot of other people plus CNN on the TV. Too much noise and stimulation and I was hit with a wave of fatigue, so was in no mood to deal with the neuro when I finally got to see him (and to top it all off, there were ants crawling around his office). And he didn't have my chart and didn't have my package of facts or my really cool graph. (boil, boil, here comes trouble)

So he tells me to see a PSYCHIATRIST to determine 1) if there are any other medications that I could take for fatigue and 2) if there is an underlying reason for my fatigue other than MS. I started to cry (fatigue does that to me, unfortunately). I have been fighting fatigue for well over 7 years. Haven't we tried everything already? What else does he expect me to give up so that I can go to work? But like a good girl, I wiped my tears (on poor husband's sleeve) and went home and called the doctor he recommended, now waiting for call back.

This was Round 1. I'm beat up pretty badly but soon will be ready for Round 2. Fortunately, I knew this was not going to be easy. Unfortunately, I wasn't prepared for how much it was going to take out of me.

keywords: multiple sclerosis fatigue and disability

8 comments:

  1. Oh, Joan, I am so sorry to read how badly that went. I had similar experience (wrote it on my blog) and I cried for a couple of hours after I got home.

    About the only doc he didn't refer me to was a psychiatrist.

    You can always refuse to go, but in the interest of your ultimate goal, I would furnish him with tons more paperwork on fatigue and show him you are knowledgeable and do know what is the root of it.

    I don't know how long you've had this neuro, but after a day like yours, I'd consider changing neuros.

    Feel better soon,
    Anne

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  2. I am so sorry you had to go through that. I know how emotionally draining that can be. Hang in there, your in my prayers.
    Sharon

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  3. Sounds to me like you were more professional than your neurologist-

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  4. So sorry Joan, very unfair to have to go through all this. I didn't apply for disability through my employer. I went straight for Social Security at the urgence of my doctors. It's a shame they make you be unemployed for 6 months before eligibility (you could go under and many do), but they too, sent me to a psych for evaluation before approving me. Hang in there.

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  5. That sounds like the biggest bunch of outrageous BS I've ever heard. What a jerk and a cop out. That makes me spittin' mad. Can't take the responsibility to do the right thing so he has to put it on someone else and prolong the daunting task for his patient. There's just no excuse. I am so sorry that they put you through that.

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  6. Thanks so much to EVERYONE for your support - I really needed to hear from you.

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  7. What can I say, Joan? Probably not a lot that would soothe you...and I suppose using the "f" word on someone else's blog is completely inappropriate! But I'm thinking it in YOUR HONOR all the same...

    It's a beauch when one is too tired/fatigued already to have to deal with the tiring nature of others...

    Linda D. in Seattle

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  8. (sigh) ... some doctors just do not want to have to do the 'difficult' work for the 'difficult' cases. Pass the buck, next.

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