1. < Neuropathy

Length dependent SFN

Posted by jan64 @jan64, Oct 23 12:54pm

I just got my biopsy over the phone. I have an appointment with pain doctor where it was taken at the end of November. I have length-dependent small fiber neuropathy. My neurologist just sent his assessment to my PCP several weeks ago stating that he did not think I have peripheral neuropathy, but that I had central sensitization! So while I feel vindicated, I am still wondering how I got it. I recently posted that I took myself off the rosuvastatin (Crestor) on my own at the end of August. I was on it for borderline high because of my family history of heart disease. I had it start in my hands and progress to arms, then my feet and legs. It is now pretty much everywhere (spine and most of legs and arms). I have had bloodwork done, but nothing was found other than high b12 and high b6 (though I was told it was not at a toxic level). Elevated ANA on one test , but not on repeat test.
Any advice with what to do next (other than find a new neurologist and a new PCP, who at the height of my pain offered me only lexapro).
thanks

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jan64 | @jan64 | Oct 28 5:04am
In reply to @janieel "I had SFN which was a side effect of Rosuvastatin. I was on it just 5..." + (show)
@janieel

I had SFN which was a side effect of Rosuvastatin. I was on it just 5 1/2 months. After being OFF Rosuvastatin
, it took about another 5-6 months for my nerves to heal as my Boston neurologist said they would! I’m finally back to normal!
While experiencing the symptoms of SFN, I thought I’d never get better! Lots of blood work, tests and nerve conduction studies to determine that I indeed had SFN.

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I was on rosuvastatin 20 mg. for 2 years. My test results on nerve biopsy say
severe length dependent SFN on all 3 sites on leg. The reference range was
>9 normal. Mine is 1.8 when severe is 0-2 mm fiber density. This is so discouraging, but I did go off the statins at the end of August. More blood tests this morning for celiac disease and a few other things. I'm glad to hear you are back to normal.

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jan64 | @jan64 | Oct 28 8:33am
In reply to @julbpat "Glad you have a specific diagnosis. I have exactly the same. I tend to go through..." + (show)
@julbpat

Glad you have a specific diagnosis. I have exactly the same. I tend to go through periods of not commenting on the Forum, because I hate to give endless negative advice. My first symptoms, pain in my feet, started 9 years ago. It took seven more years to get the correct diagnosis of SFN. So you are way ahead of the game.
One thing I feel confident saying - you will be better at putting this puzzle together than any physician. I try to gather all the facts, then talk to the doctor who helps me the most - at UAB, two hours away. I use my local neurologist for prescriptions and physical therapy referrals, local imaging orders, etc. I realize that he is never going to put the puzzle pieces together.
Even though your symptoms came on suddenly, and may indeed be related to the medication, I encourage you to think long and hard about the past ten years or so. Any odd medical things? Any unexplained pain, like muscle soreness that was excessive related to your activity? This will help you decide if the medication was truly the cause, or maybe just a coincidence.
Also start using Google to read research articles. I tend to find articles from NIH. I don’t try to understand all of the research, but just see if anything jumps out at me. Again, no one else is going to do thorough research for you. But they might appreciate a legit research article that you have found.
My SFN is idiopathic. My sister and I both have the same symptoms, although mine is worse. She has not been to a doctor about it, or had testing. Genetic screening at Hudson Alpha, which is here in Huntsville, was negative. I continue to get worse.
Whew, that’s all for now!

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My neurologist (3 hours away) referred me to neuromuscular specialist, who is not taking patients. I called central scheduling and was offered March 7 appointment. I asked if I could be put on cancellation lists for the 2 neuromuscular specialists (apparently that's all there are now in all of UPMC network, which is vast). So, maybe I will know in 48 hours if I can get on a list.
Meanwhile, my neuropathy has spread to include most of my body. Very tight feeling in legs and arms. I am getting that sensation of ants crawling on my face sometimes as well. It makes me very anxious that I can do nothing to stop it or to find out the cause. I printed the list of tests Dr. Oaklander suggests for finding cause of SFN, and I've had many blood tests already. I don't know if my Lyme tests are Western Blot, it doesn't say that.

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