Chronic Lyme Disease Summit 2

Countdown!

If anyone had ever told me a few years ago that I'd be looking forward to an appointment with a neurologist with the same anticipation as attending a Bon Jovi concert in the past, I would've thought they were nuts.

Here I am, counting the days until I can tell this neurologist about all of my symptoms. Nine more days.

I've been keeping a symptom diary. It doesn't make good reading. If anyone ever saw it, they'd never believe it. I hide it all so well. The invisible, mysterious whatever-this-is.

My PCP made the referral for me in late May, around Memorial Day. I had to wait that long for the appointment -- over two months.

Had I waited just four weeks to make that demanding phone call to my PCP, I might have made a different call, for on June 21st, the FDA finally approved a drug (Lyrica) to treat fibromyalgia. And, as a consequence, fibromyalgia is now "recognized" by the medical establishment. Why, there are even ads on CNN for Lyrica and a special web page on Phizer's web site directing people to "fibro" information. Un-believable! To how many doctors have I suggested that I have fibromyalgia? I've lost count. Six, maybe seven. And I was dismissed as a crazy loon, "there's nothing wrong with you" -- well, I've gone into all that before, so I won't again.

During the second month of waiting for the neurology appointment, and due to keeping my symptoms diary, I have figured out that something happens to me about 30 minutes after I eat. I get intense burning pain in my shoulders and back (the usual places that I've always had the pain), and bone-crushing, indescribable fatigue. I never connected it with anything until this past month. True to form, I've looked up everything on the internet. The fatigue reaction is something called reactive hypoglycemia, and it is very common in people with fibromyalgia. But I can't find anything that relates this to the pain. It is literally like my upper back is on fire. Even my skin feels hot to the touch when it happens. It is very bizarre. I certainly will mention it to the doctors.

If nothing comes of the neurology appointment, my next step is to talk to my PCP about the Lyrica ads. I don't want Lyrica, I want a diagnosis, but if a discussion about Lyrica has to be the catalyst to get diagnosed, then I'm definitely going to bring it up. My appointment with my PCP is just a few days after the neuro.

I have started a group on Yahoo Groups called "undiagnosed". Fellow suffers of mysterious, unexplained pain and fatigue syndromes who are frustrated by being unable to get a diagnosis, please join the group! It will be up and running soon.

Stay tuned!

K2
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