Originally Posted by DaveSP (Post 1224432)

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.

Originally Posted by DaveSP (Post 1224432)

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.

Originally Posted by DaveSP (Post 1224432)

Is there hope for the SFN to get better?

What are the chances of it getting worse?

Any suggestions?

Originally Posted by DaveSP (Post 1224432)

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"?

Originally Posted by DaveSP (Post 1224432)

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.

Originally Posted by en bloc (Post 1224469)

There are literally over 100 causes of neuropathy. Diabetes (even pre-diabetes) is top of the list and you should be thoroughly checked for this. Also consider any previous antibiotic use (especially Fluoroquinolone class--Cipro, Levaquin, etc).

Then look at alcohol consumption, infections, toxins, injury and/or compression issues, etc.

You need a doctor that will explore causes, as the best way to treat is to address to actual cause, not just treat symptoms. But that leads me to ask...did he even offer any treatment options for your pain until you get into pain mgmt?

To answer your question: Yes there is hope...if you find the cause and/or you find the right treatment. The only way to know IF it will get worse, is by knowing the cause or waiting to see if it gets worse. If it is from pre-diabetes, then getting your glucose under control can reverse your symptoms. If you don't treat your diabetes, then it the SFN will definitely get worse. Just stay on top of your doctors to follow up with investigating the cause in order to find the appropriate treatment.

Originally Posted by madisongrrl (Post 1224475)

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.



Poor bedside matter is unfortunately very common with SFN symptoms. I personally feel that karma will sort these doctors out in the end.



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.



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.



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.

Originally Posted by DaveSP (Post 1224516)

Thanks for the advice and encouragement. I'm glad you are moving in the right direction with your treatment. I will look into the books you mentioned. I did have the Western Blot test, all bands were negative. Question for you or anyone else--does that still mean further testing is worth while? I do have a top LLMD near me so I will consider seeing him.

Originally Posted by DaveSP (Post 1224514)

Thank you. I am going to see other doctors and try to figure out whats causing this.

He did not offer any treatment options or advice, other than to go to pain management. Absolutely no interest in figuring out what was causing this, or referring me to someone who could at least try. This is a doctor at what is considered a top hospital in NYC.

Originally Posted by echoes long ago (Post 1224569)

which hospital? im from NYC, it would be nice for other PN sufferers to know which doctors and hospitals to avoid and not waste your time with

Originally Posted by madisongrrl (Post 1224539)

If it's the standard western blot the bands might be negative because your immune system is so compromised that it's not producing antibodies. You might have a strain of Borrelia that isn't included in the western blot or you might have co-infections that certainly won't be tested for. Prior to my iSpot Lyme test, I was given antibiotics for 6 weeks, then I was tested.

If I were in your shoes, I'd probably follow up with Pain Mgnt. You never know what type of clever doctor you might meet who might want to try to find the cause to your symptoms. I'd push your primary to get more lab tests done - especially autoimmune. If nothing turns up from any of the testing and your primary gives up on you, then see a LLMD if you think Lyme disease might be a reasonable avenue to pursue. It's helpful to the LLMD to get everything ruled out prior to seeing them.

Originally Posted by DaveSP (Post 1224622)

Thanks for the info. I wasn't aware of the iSpot test.