Posted 5/12/2013 11:51 PM (GMT 0)
After the merry-go-round of doctors we're all familiar with, I started looking for someone who specializes in fibro. This became a priority after another doctor prescribed two drugs to me that should not be used together. I had no reaction, thankfully, but wow.
I found someone near me & after speaking with them, found out he no longer sees patients, but wanted me to come in to discuss research.
After speaking with him for a good long while, and becoming ever so impressed with his knowledge, I guess I was just dazzled to find someone who knew what he was talking about and understood every single thing I had to say, that I just lost my mind and agreed to be examined as a possible participant of the study.
During the in-depth exam he gave me, he said i could stop the doubting, there was no question about it, I have Fibro. Hearing the words just about sent me to the floor because I have been dismissed so many times that I would doubt myself at times. He also found some other issues that I always knew I had a problem with, but had been over-looked/not noticed during exams or dismissed because of no blood indication. He was going to be sending a letter to my GP with his findings so everyone is on the same page.
It was almost like being with a psychic. He pinpointed L5/S1 back problems because I have no reflex in my ankle. (I had a prior herniated disk that was surgically snipped off a couple years ago). My thyroid is enlarged, a 'sure indication' of hashi's (he said it wasn't a goiter or nodulous). I had been dx with hashis several years ago, but my numbers got better and my thyroid has tested clean since - no antibodies at all. Dx was dropped from my chart. But apparently, you can have hashi's without the antibodies. I also have tachycardia, which we are hoping was caused by Savella, but I don't think it is. I had noticed a high pulse rate a few times, but no one seemed concerned with it, so I just dismissed it.
I have a host of specialists I am going to need to see after the study is done. He also found an issue with my sciatic nerve, where I believe he said the piriformis is pressing on my nerve. He said the nerve was shorter and fatter than it should be. Basically it's what has been causing me problems laying on that one side, sitting too long, car rides & motorcycle rides being painful...
Anyway, after this study is over, he will work with me to find a treatment plan that will work for me, then I will be referred over to a Rheum who interned under him for maintenance.
The downfall of the study is I have to be med-free for 2 weeks. I can do that as long as I don't have a flare. I also have a 1 in 3 chance of receiving the placebo.
I'm nervous. But I am happy I found someone who has been a pioneer in the fibro field and maybe I can help others down the road, along with helping myself, because after that in-depth exam, it is confirmed that I am just a hot mess!