Just got a positive biopsy for SFN.
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.
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. I am going to get a second opinion but before I do so I though I'd ask here. I'm 40/m. Other medical problems include mild sleep apnea, fatigue, tiredness, unrestful sleep, brain fog, depression, anxiety, burning sensation in feet (which I understand is the SFN.) The burning has been a more recent (past few years, the other symptoms I've had for about 15 years.) I am low functioning due to the tiredness and brain fog. Is there hope for the SFN to get better? What are the chances of it getting worse? Any suggestions? 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"? 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. I've had full blood work done, all negative. Here are my results if anyone's interested. Epidermal Nerve Fiber Density Test RT Calf: 3.96. Abnormal <3.9 Low Normal 3.9-4.6 RT Foot: 1.1. Abnormal <3 Low Normal 3-4.8 Sweat Gland Nerve Fiber Density Test RT Calf: 45.3. Abnormal <36.5 Low Normal 36.5-38.5 RT Foot: 34.8. Abnormal <34.8 Low Normal 34.8-35.9 |
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. |
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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. |
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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. |
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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. |
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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 |
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Reasons why tests are negative: Reasons for False Negative (Seronegative) Test Results in Lyme Disease Scroll down to the tests section - Reasons for False Negative (Seronegative) Test Results in Lyme Disease An article by Dr. Cameron why you are supposed to treat based on clinical symptoms: Relying on a negative Lyme disease test can prove deadly - Daniel Cameron MD |
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For people with these diseases it may well be an okay diagnosis because those diseases may well play games with the brain that affect the muscles and the nervous system. But in your case I wouldn't accept a diagnosis of Fibro when my small nerve fibres are being damaged. Keep fighting your corner - there will be answers and in those answers lie your treatment options I feel. |
Neurologists vary in their interest in peripheral neuropathy. Sorry you got a dud. I don't have a great method for finding good doctors, but one starting point is the doctor's directory at the Foundation for Peripheral Neuropathy web site. How To Find A Neurologist In My Area | List of Neurologists It seems you're in New York? Several docs there. If you want someone who also does research, you can run each of their names through PubMed and see if they've done any PN research. Home - PubMed - NCBI
This place looks interesting, all the docs have indicated that they're interested in idiopathic neuropathy. The Columbia Neuropathy Research Center You don't even have to limit yourself to New York. The department of Neurology at Yale has some focus on PN research--though I'm not sure how to find a good clinician there. If you have a good general practitioner/primary care doc, he or she could be a good person to ask. |
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