My feet are not doing well. I suspect I could heat the house with them. AND it is 40 below outside (obviously) Jim
Long-term remission of primary erythermalgia with R1150W polymorphism in SCN9A after chemical lumbar sympathectomy.
Department of Interventional Radiology and Vascular Surgery, Peking University Third Hospital, Beijing, China.
Primary erythermalgia (PEM) is recalcitrant and long-term remission is difficult to achieve. Favorable results of treatment using carbamazepine or mexiletine have been identified in some PEM patients with SCN9A gene mutations. However, no therapeutic studies regarding patients without pathogenic SCN9A gene mutation have been reported. Here we present a PEM case with R1150W polymorphism in SCN9A and a five-year remission was achieved by chemical lumbar sympathectomy (CLS). A 15-year-old girl with severe PEM attacks in both feet and lower legs was treated with CLS and followed up for five years. The encoding exons and their flanking sequences in the SCN9A gene were amplified and sequenced. A 50% immediate pain reduction was achieved after CLS. Burning pain, erythema and swelling in the lower legs disappeared in four days, and all ulceration healed in a month. The patient resumed normal exercise five months after CLS. There were no relapses in the following five years. R1150W polymorphism in SCN9A was detected in the patient and her healthy father. Long-term remission was achieved after CLS in this PEM case with R1150W polymorphism in SCN9A. The effectiveness of CLS and phenotype/genotype of PEM should be further studied in larger samples.
I also have primary EM and I had a temporary sympathectomy a few years ago. It made the pain much worse and resulted in the EM getting stuck in a permenant flare. When I was "diagnosed" by a medical physicist, he told my dad (a doctor), "Never let anyone sympathectomise her". The results of my trial one show that he was right.
Thank you VERY much for the information. The sympathectoy solution scared me. I am doing a Prednisone high dose, low time experiment. 80 mg, 7 weeks and then slowly get off the bad stuff. This is day #5. No great promises yet. Like the sympathectomy it does show promise from 6 or 7 other people. This is bad for the liver, bad for the kidney and bad for the adrenal glands. You can get diabetes, and maybe MS. Besides that and the immediate side effects, it is great stuff.
You're more than welcome Jim. I love your humor too! My sister took prednisone for a different disease, so I have some understanding of how horrible it is. I'm also being a good little guinea pig with the lidocaine infusion, it's been 8 days since I had the first one and it's showing promise, it's delaying the onset of my nighttime flares by about 6 hours. I'm having the second one on Wednesday (8th Feb), will keep you posted. I'm off to munch carrots and rearrange my hay...
Yes, please keep me informed of the lidocaine. I will have a battle to get my doctor to do it (as I did on the prednisone) but I am quite firm, quite insistent and very polite. There is still hope for this.
You mention my sense of humor...my adult kids told me the other day that they didn't realize I had a sense of humor until they grew up and then they could see it. Somehow I found that humorous.