Sometimes I’m not sure whether to file posts under my diary or in the health conditions section. It’s been a little while since I’ve done a personal update but I had a doctor’s appointment last week and, as always, I learned something new. The other day when I said I was feeling better than ever, I wasn’t exaggerating. I no longer have the fatigue I was suffering from last year and my mind feels sharp and focused. But one thing does persist. My tinnitus. At the start of this journey I mentioned the high-pitched ringing in my ears, which got progressively quieter over the last six months. But it’s still there. Quiet, but still there.
Some people say tinnitus comes on for “no reason.” And it stays or goes for “no reason.” Well, if you’re getting to know me you probably realized by now that I don’t believe in “no reason.” There is always an underlying cause. I spent the last year digging into every possible corner of the unexplained health issues that plague us. From nutrient and mineral deficiencies to viruses and bacteria to hormone dysfunction – my mission is to find (and help others find) the root cause of their health problems. I’m new to all of this but something that is becoming very apparent to me is that most of our health problems are related. And this folate caper is the key to unlocking many of the doors that stand between so many people and better health.
I wanted to give my doctor a perfect health report, I really did. But the tinnitus is still here. So we started talking about it. “You know,” she said. “They’re finding that a lot of the fibromyalgia patients have this small fiber neuropathy. Do you ever get any tingling in your hands and feet?”
Actually, come to think of it, yes. Yes I do. I don’t have fibromyalgia or any pain, but very occasionally – perhaps every three weeks for about 30 seconds, I’ll feel a slight tingling and numbness in my fingers. It’s usually just on one side and is barely noticeable. I always thought it was a B12 issue, but it shouldn’t be going on anymore because I take methylcobalamin shots every two weeks. And when I think back to last year before I found out I had MTHFR, the numbness was more pronounced and happened more often. As I told my doctor about this she started nodding.
Multiple recent studies have found that perhaps half of fibromyalgia patients have peripheral nerve abnormalities, ranging from a loss of small fiber innervation to nerve damage. Now as I said, I do not have fibromyalgia symptoms such as pain, burning or serious fatigue. But as we know, fibromyalgia patients often have MTHFR mutations and methylation issues can exacerbate the problems they face. This draws a huge connection between methylation gene defects and the constellation of symptoms that face both fibromyalgia and ME/CFS patients. Furthermore, patients who have small-fiber polyneuropathy (SFPN) may not present with any pain but may have other symptoms: abnormal blood pressure, gastrointestinal disturbances and tachycardia for example. Well guess what? A review of my vitals and symptom reports from my last few appointments showed blood pressure fluctuations, gastrointestinal complaints and a couple of instances where my resting heart rate was in the 90s. That’s not technically tachycardia but it’s pretty close.
The next step for me was to have a quick scan to look for physiological evidence of SFPN. My doctor uses Sudoscan (pictured), which is a simple noninvasive tool that evaluates sweat gland function through electrodermal response in the hands and feet. I just had to stand with my hands and feet on four plates for a few minutes while the scan completed. I’m not sure what measurements the results are done in, but I came up below normal in both of my hands (feet were good). The scale showed a range from small fiber neuropathy to myelin damage to nerve damage.
I found an excellent blog post that really explains this SFPN issue in detail so I will refer you there for further reading. It’s prompting me to bring up another biomarker I’ve had since I began seeing my doctor for MTHFR-related issues last year. I haven’t mentioned this yet on the blog because I couldn’t explain it (and before everyone runs to comment that I should get tested for Lyme disease: I have been and I don’t have it – though under-diagnosed Lyme is endemic and my next post will be about that). I’ve had low CD57 lymphocyte counts every time they’ve been measured since last August. Now, there’s a whole host of things besides Lyme disease that can cause low CD57s but I also did testing to rule those out. My doctor has always said she sees these numbers in her chronic fatigue patients. As Mr. Johnson (founder of Phoenix Rising) explains in his blog post, these low numbers are more a marker of chronic infection and immune dysfunction (autoimmune issues were also present in a third of the patients in the referenced study). And immune dysfunction is associated with small fiber neuropathy. I had my CD57 tested again last week but do not have the results yet.
My doctor is convinced that this is all related to the MTHFR, especially as I am feeling so much better as my treatment progresses. I’ve even been able to reduce the amount of thyroid medication that I need to take. My number one complaint right now is the tinnitus, which is still there albeit at a much lower volume than it was last year. She recommended that I continue my B vitamin supplementation, which includes the active forms of all the B vitamins, methylcobalamin injections twice a month and the glutathione precursor supplement that I’m taking. She thinks that I may have been even lower on the scale last year but we don’t have a baseline because I did not do a scan back then. The tinnitus becoming quieter is an improvement, as is the fact that I am no longer tired or experiencing any sleep problems or other issues. She thinks that the untreated MTHFR over time could have caused the trouble. Remember that many of my more obvious problems began when I started taking high doses of synthetic folic acid and cyanocobalamin along with drugstore-quality prenatal vitamins (before I knew better). I’m sure my health has been impaired by MTHFR mutations but the underlying issues were intensified by the wrong forms of vitamins. Of this I am convinced.
**Update 11 Apr 2014** – I’m almost certain I have figured out that the cause of my tinnitus was a fluoroquinolone toxicity reaction. Read more at the link.
Do you experience any symptoms of small fiber neuropathy?