I’m sorry I’ve been gone for a bit… went to Hopkins to see a Neuro and he said I do have SFN despite normal skin biopsy. He believes my nerve fibers may look normal but not function correctly. He thinks my cause is related to a mutation in my scn9a mutation that I actually located doing 23&me! I’m still awaiting my Xenon results to see if I have a genetic form of EM likely caused by same mutation.
My Hopkins Neuro states he doesn’t know if my red toes are only SFN of if I have both.
I continue to struggle with a burning sensation on the fronts of my thighs. I’ve tried a lot of things and I think Capsaicin works best. I’d love to chat with other genetic victims. I have two sons and I already see red toes in my youngest when he wears sneakers and socks.
Hope you are all hanging in there!!
My meds: lyrica, Effexor, Trental, misoprostol and amitriptyline at night.
Biopsy!!!
I also went to Mayo last June and they said I don’t have SFN. Crazy road!!
I have started a new treatment. It’s called Neurogenx. You can google and read about it. Will keep you posted
Joan,
Who recommended the Neurogenx treatment for you? I did a Google search for it and a few things would concern me.
1.) I can’t find any analysis for Neurogenx that is not provided by Neurogenx itself or practitioners.
2.) I googled the contact address for Neurogenx corporate offices and its location is a nondescript single family home in a residential neighborhood.
Neurogenx lists its corporate offices at:
314 N. Walnut Street, Suite 2A Lansing, MI 48933.
I pulled that address off the Neurogenx contact information page.
314 N. Walnut Street in Lansing, Michigan is the home in the image below. It does not look like the corporate offices of any legitimate medical supply or device company.
My primary care physician recommended I have a consultation with Neurologist Dr. Barehman. He has offices in La Mesa and Coronado in San Diego Calif. He is the only neurologist offering something besides more drugs. In fact patients of his are able to cut back or even go off their drugs because they have become free from pain. I figure all I have to lose is some time and money and possibly gain relief from this terrible condition. Will keep all posted.
Joan,
If it worked as effectively as claimed on their website, a major pharmaceutical company would have already bought the patent from them. Effective treatments for neuropathic pain are highly sought after. The idea some no name corporation, whose offices are run out of a single family home, has developed a medical device capable of reducing or eliminating neuropathy symptoms in 4 out of 5 patients is not believable. If it were true, it would be headline news. If it were true, it would be in peer-reviewed medical journals. If it were true, there would be news reports about it. Most notably, the patent would have been bought by Siemens or Abbott Laboratories or just about any other medical device/pharmaceutical company with billions of dollars in income. It wouldn’t be coming from some random residential home in Lansing, Michigan. At the very least, if it were proven to work, they would have been able to secure a significant amount of cash from outside investors, enough to get a better looking website and an actual corporate office.
I think you’re going to get ripped off. Sick people, who are so often desperate, are the easiest people to scam.
Hey Amy,
What’s Xenon?
Hi Amy,
23&Me is fascinating to explore. You can go into the raw data,type in SCN9A and look if anomalies come up positive. I too have primary EM. I have a rock star Naturopathic neurologist who told me to go on Amazon and use CBD oil. 2 droppers under the tongue 3X a day. I’ve been using it about 2 months and really do think it has helped. I’m on Lyrica 150 am & pm with Mexiletine 150 Mg am & pm. When the burning gets out of control I get a lidocaine IV about every 3 months. Mads has been my encyclopedic genius throughout this whole despicable ordeal. Hope this info is helpful to you. Oh! I’ve never figured how putting capsaicin cream on your burning skin can help. I tries it once and couldn’t wait to wash it off. I don’t get it.
Patricia
A Pharm company in Canada who is doing an EM study
Hi,
Yes 23&me allowed me to find my mutation.
My small fiber seems worse than my EM at present.
I use the capsaicin patches on my thighs that are affected with SFN making wearing pants a mess.
How is the melexitine and lidocaine IV helping?
My Neuro wants me to try lamictal.