SCN9a results negative
 

Hi Everyone.....just wanted to give you an update on my genetic test for SCN9a. It was negative. My neurologist is now testing for SCN10a and SCN11a. The SCN9a blood draw was in December and I just got the results so it takes awhile but I will let you know. I suspect it may be SCN10a because that is associated with heart rhythm problems. My father had atrial fibrillation and a relentless itch which was never diagnosed as neuropathy. The dermatologists gave him all kinds of creams that didn't help but he was never referred to a neurologist. Mine was subacute onset during the months of March - August 2014. Pain stabilized and hasn't changed since onset. Trying to reduce gabapentin due to side effects. Went from 2700mg daily to 2400mg for 3 weeks. Yesterday started 2100mg but I don't know if I am going to last on 2100mg. Pain is coming back. Maybe I did it too quick? Added Benfotiamine which may have helped with the 2700mg to 2400mg decrease. That's it for now. I hope everyone is finding peace in their own way.

I'm clear on SCN9A, SCN10A, and SCN11A.

I have variants, but they're all currently believed to be benign.

I don't know whether to be happy or sad.

I can understand. I had mixed emotions when I got the negative results for SCN9a. Felt like I was back to square one and it is all so time consuming. I don't think there is much they can do for hereditary causes so maybe it is a blessing in disguise.

I was just reading about SFN and celiac disease. Often it is the presenting symptom for celiac. Have you been tested for that? I had a saliva test for gliadin which came back negative but I don't know if that is sufficient to rule out CD. I will ask during my appointment in May.

We must continue to march forward!

When I had to see a gastroenterologist at one point, he was concerned about both my neuropathy and my very low ferratin levels. He said "silent celiac" can cause both symptoms, and ran a blood test. It was negative.

I did a whole exome test in December, and just got my results back a couple of weeks ago. I'm still sifting through them, but have already found one significant variant I didn't previously know about. My levels of biotinidase run half-normal levels which doesn't seem to cause much concern based on what I've read, but I will be sure to supplement for the rest of my life.

I've had this SFN for 3 1/2 years, and am not giving up. Right now I'm pursuing it from a metabolic/intestinal angle. I tore up my gastric system with iron supplements in August of 2013, and immediately developed a neuro problem. Those symptoms subsided after about a month, but two months later, the SFN set in. Even though no doctor believes there's a connection, I can't get by the coincidence.