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Originally Posted by DaveSP
Neurologist just gave me the results of my biopsy. Says I have small fiber neuropathy. And that I have fibromyalgia based on this and other symptoms.
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Sorry for your SFN diagnosis. Many of us who have neuropathy and/or Lyme with neuropathy are told that we have fibromyalgia, which is generally not the case.
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Originally Posted by DaveSP
I tried to get some answers from him such as what could have caused this and what my prognosis was, but he brushed me off and said "you're fine--you're otherwise healthy and this isn't a big deal" Then he referred me to a pain management specialist.
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Poor bedside matter is unfortunately very common with SFN symptoms. I personally feel that karma will sort these doctors out in the end.
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Originally Posted by DaveSP
Is there hope for the SFN to get better?
What are the chances of it getting worse?
Any suggestions?
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You really need to find the cause of your symptoms to be able to answer those questions. Try to stay as positive as you can and realize that you will have to be the one to drive your medical care.
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Originally Posted by DaveSP
I am still trying to figure out what has caused this. I did have exposure to spray paint about 15-20 years ago (I used to paint murals) but most of the time I wore a vapor mask. Most of the cases I read about are people who had regular exposure at work for years. I know lots of people who had the same amount of exposure as me or a lot more and are fine. Still, it lingers in my mind as a "what if"?
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A conventional doctor will tell you that this is not causing your symptoms. However, this could be playing into your symptoms. An integrative/functional medicine doctor who is familiar with this situation can test you for various heavy metals or specific chemical exposures. One excellent book that I've purchased is called Why Can't I get Better? by Richard Horowitz, MD. Even through the book's main topic is Lyme disease, it is very detailed about fixing the other issues beyond the Lyme infection that are causing the patient to suffer. It also gets into autoimmune issues, dysautonomias, neuropathies, etc. It's an excellent reference book.
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Originally Posted by DaveSP
Chronic lyme also comes up as a possibility, as I am in an area with a lot of lyme (my dad had it twice) but that is a controversial diagnosis and it seems like if I do have it, it is late stage and nearly impossible to test for.
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Chronic or late-stage Lyme is really not as controversial as you might think. If you are interested in understanding the holes that are in the conventional science, I recommend the book Cure Unknown by Pamela Weintraub. She is a science writer who tells both a personal story of how her family went through the whole nightmare of Lyme and she also reviews the actual evidence....the science is not black and white, it's very nuanced.
If you've had a conventional Lyme test from your doctor, it has a 50% failure rate (based on 3 studies). It was also meant to be a surveillance test for epidemiology, not a clinical test for diagnosis. If you think Lyme/co-infections could be causing your symptoms, contact ILADS.org and have them send you a list of Lyme Literate Clinicians in your state. I was diagnosed with Lyme via a test called the iSpot. It seems to be a very solid test. Some doctors rely on Ingenex western blot as well.
Lyme was ultimately the cause of my vestibular and neuropathy symptoms. If you click on my name, you can read my backstory from prior forum posts. I will post an update on my situation soon. Lots of things have been happening - I have IV antibiotics heading my way and I saw an awesome vestibular rehab specialist who has a background in vestibular and neurological issues; she might send me for autonomic testing because she took the time to read the last 3 years of my medical history and it has dysautonomia written all over it.
Good luck and I hope you get to the bottom of your situation soon.