Here goes…
Hi Tara,
I’ve read most of your posts since I’ve joined this board; don’t know if we’ve talked much before, but I wanted to share my opinion. None of this is “mean-spirited” and is meant in supportive terms, so please don’t read it any other way. You seem to be the type who prefers straight talk, rather than BS, so I’m gonna talk to you “straight”.
I understand your frustration; at least as much as I can. I’ve encountered a lot of it myself.
I was diagnosed with Depression back in the 90’s. I called “BS” on that and told my wife the guy was a quack. But, after several months, and several other non-partnered docs all suggesting the same thing, I made a decision. I decided that perhaps I was too “emotionally” involved; that my perspective may not have been correct. I figured that there had to be SOME reason that everyone but me thought the same thing. So, I sat down and considered what the drawbacks would be to giving in and trying their suggestions. Would it make things worse? What would I be out if I tried it? Was there any risk involved in considering their dianoses? While I still didn’t agree, I decided that I had to at least acknowledge and try the suggested treatments, if for no reason that to prove to them and myself that I was right. That also required allowing for the possibility that I was wrong. Turned out we were both a little right and a little wrong. The AD’s (anti-depressants) worked to a degree, but there were some things they didn’t help with. I think, from reading your posts, that you need to consider that you’re too “biased”, and consider listening to a few TRUSTED people who are suggesting alternative. You need to allow that you might be wrong.
I don’t think there’s anything wrong with your idea of a compromise, either. I’ve done that with my GP…I’ll try your treatment, if you try my lab test. Kind of a tit-for-tat approach. If you have a decent doctor, and they test doesn’t cost a billion dollars, why wouldn’t they approve?
Are you receiving any type of therapy/counseling? I hope the monitor didn’t just click off, or the door just slam. I’m not calling you crazy or anything like that, but consider this: PhD’s are paid to listen…MD’s are paid to diagnose. Over-simplified, but does that make sense? While I’m new to CIDP, I’m not new to chronic illness, as I’ve fought one for over 8 years now. Anyone with a chronic illness will, in my opinion, need the help of a therapist from time to time. It’s frustrating, maddening, you’re up one day, and down the next. Just when you think you’ve made a step forward you take two steps back. We need someone to talk to, who is emotionally distant enough to give us some honest feedback. Your posts drip of frustration over not being listened to; I’m just trying to offer an option that will help with that frustration. Not making any judgements or anything like that. Hell, I’ve got so many issues I’d be a counselors dream patient. He/She could retire off of me!:D
I also get the impression that you’re looking for a “one size fits all” diagnosis. From everything you’ve posted, I’d have to suggest that it’s entirely possible that you DO have Fybromyalgia AND one or two or three other things. Just having FM doesn’t mean that you don’t also have CIDP, PN, or whatever.
You mentioned your suspicions about an FM diagnosis. You DO know that it’s a diagnosis of “exclusion”, right? In other words, based on your symptoms, they check for all the other things it “could” be, and if none of those are positive, they decide it’s FM, based on the “exclusion” of other findings. MS is actually a diagnosis of exclusion, as well, as are many, many “syndromes”. My other chronic illness is one of those, so I had to learn about it 8 years ago. While it seems like a handy little bag that some doctors throw all their “unused parts” into, it’s actually very common, and a justifiable medical approach.
Hope you understand that this is all said with care and compassion. You may decide I’m nuts; that’s okay…that’s not a very exclusive group. But I’m trying to be honest, which is why we all come to these boards, isn’t it?
Best of luck,
Elmo