Tuesday, March 15, 2016

Guillain-Barre, I Hate You

I've been struggling with writing this today because I'm so sad and frustrated. The last MRI found nothing of significance to cause what's happening to me. There is mild degeneration, mild arthritis, etc, but no spinal chord issues and no tumors or lesions. I mean, this is obviously great news, but for me it's just more questions. Without something staring us in the face and saying "hi, I'm the reason you're in constant pain and your legs are tight and miserable", we are left with nothing but more questions, and more tests, and I am left frustrated and sad. I can't think of another word for how I'm feeling except sad.

So, U of M here we come. You've got your work cut out for you. Mayo may still be an option, also. I spoke with my doctor today, and he agrees I need to write a detailed letter explaining the whole story. Mayo is only seeing a very small picture of a much larger story that spans nearly 18 years now, and in my doctor's own words "this is not an easy case". I am going to write that letter, and I am also going to ask my doctor if he would be willing to write one as well. Since my records from my initial illness are long gone, it's up to me to fill in the blanks that Mayo has not yet seen.

So, here I am, back to square one. Thankfully, I officially fired my old pain doctor and now have my primary physician handling my pain management. He supplied me with a Fentanyl patch today, and so far it's making a world of difference! The only tweak that will need to be made is a stronger dose. He gave me the lowest dose just to be on the safe side, and I agreed that was the right way to go, but I can already tell I will be fine with a stronger dose, and I am definitely going to need it. The benefits of the patch are too numerous to count; starting with, I actually felt like I might be able to stand up today. I tried, but things are still too bent and too tight, but the urge was there, and I feel after having the patch a bit longer, and maybe even having to wait for a stronger dose, I might be able to start standing again. If I can do that, I can hopefully get these damn legs working better and not just being huge pains (literally).

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