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Originally Posted by canagirl
no, the neuro hasn't mentioned crps. She only mentioned anxiety and if I get more sleep and stop worrying I should be fine. She is away so she hasn't seen the positive biopsy results yet. Maybe, she will listen a little more carefully now.
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She might listen or she might not....sometimes neuros don't think much of a positive skin biopsy result once diabetes has been ruled out. Hopefully the gabapentin helps get your pain under control which will help your anxiety levels....this will help you present better to your doctors.
It is ALL about how we present to our doctors and make them want to look for a cause for our symptoms. It's very easy for them to write people like us off. Quite frankly, if these doctors had the full body, crazy symptoms like many of us on this board have, I bet they would be feeling mighty anxious too.
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Originally Posted by canagirl
I don't have the outward signs...but talking to people on the crps site there are many that don't have outward signs. I do have other signs from the criteria list.
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While it could be possible, I think the most logical assumption here is that you have SFN, and don't necessarily have CRPS. They have very similar symptoms and you already have a positive skin biopsy that points you in that direction. You said your Primary was doing his research. Maybe have a frank discussion with him about the lab tests that need to be performed - specialized nerve tests, autoimmune tests etc. There is a really great speadsheet from Lisa Jane that lists all the lab tests that a neuropathy patient should consider. Print it out and bring it into your next doctor appointment with your Primary.
You might want to consider not reading the CRPS message board for now, because it will spin you up even more. When I started on my neuropathy journey, my old Primary thought I had CRPS and boy was she WRONG....and her wrong assumption not only got my original neurology appointment cancelled (long story) but it also spent me down a path of research that seriously worked me up for no good reason.
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Originally Posted by canagirl
The thing is... I know there isn't anything wrong inside my body that is causing this. This all begin with twitching and jerking after taking domperidone. In a quest to fix that problem a naturopath ran a microcurrent through me for 45 minutes, I went home that night and felt like I had electricity running through me and I burned horribly all over. The burning died down after about 6 weeks to a better level. I then did acupuncture and that's when things blew up in terms of pain, compression feelings, stinging, numb feelings, and pulsing. It definitely all could be a coincidence that this stuff happened on the very nights and morning after these treatments...but In my heart I don't think so.
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The fact that you were already presenting with symptoms before the naturopath and acupuncture treatments likely means they were not the cause of your SFN symptoms. It seems as if the symptoms were already there and were just coincidentally starting to ramp up during those treatments. There could very well be something going wrong inside your body and the cause has not yet appeared.
Many people on this message board have had this style presentation - symptoms were slowing creeping in over weeks or months, then WHAM all the sudden full body symptoms appear in a very short period of time and they are debilitating. It's so shocking when it happens that it makes it very difficult to wrap your head around what is going on. I gain more perspective on my situation every day that I live with this full body burning awfulness.
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Originally Posted by canagirl
Everything is so slow here...I'm sure it will take another year to run the tests and get the results back for things only to all be negative. in the meantime... I don't know how to handle myself...
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I think that is even more reason to hold off on the 6000 dollar treatment for now. I'm not sure how it works in Canada, but you might get some faster testing and answers by paying cash for the lab tests that you and your doctor determine you might need.
My neuros have turned me out to pain management and are done looking for a cause for my symptoms. I have a sorted past of having been treated for a tick borne disease (4 negative lyme tests, but severe symptoms along with the timing of a deer tick bite back in 2005). I've typically have several known tick bites each year (ex-avid mountain biker). Plus, those dang deer ticks are even abundant in my back yard in suburban Madison, WI - which is not normal.
So for me, I've found the best use of my time and money has been to: 1. Get my pain under control via medication and therapy so I think clearly and make good decisions about my life. 2. Look for the most likely and logical cause of my issue. For me, tick borne disease is the next path to examine and cash will be king for this journey.
Good luck!