Over the last four years I’ve been up and down on whether or not I had developed MS. Back in 2014 when my feet got tingly and went numb we suspected MS but then it turned out to probably be antibiotic induced peripheral neuropathy. In 2015 when we ran an extensive autoimmune panel and found I had myelin antibodies plus some new weird neurological symptoms we went back and did an MRI and, no sign of MS. I thought I’d put it to rest when in 2017 I started getting burning pain in my lower left leg. At first it was sporadic and chiropractic seemed to help so I thought it was structural. By the start of 2018 the pain was daily and interfering more with life. My ND at the time thought it was compression related so back to running an MRI to see what was going on with my discs.
What the neurologist found was a lesion on my cervical spine, right where the sensory nerve to my left leg runs. That led to a brain MRI and the neurologist was pretty sure I’d end up with more lesions and thus MS. Nope, no lesions in the brain at all. So we called it probable CIS, Clinically Isolated Syndrome, and scheduled another MRI for six months later. I had that MRI set a few weeks ago and the initial reading was no change or sign of new lesions. That was good news to me and so I expected to go into the neurologist and get that news and schedule the next MRI for six months. Instead she went back to my old MRIs and found that back in 2015 the cervical lesion had shown up on one frame only of the MRI. So, I haven’t been stable for 6 months, I’ve been stable for nearly 4 years.
The neurologist is now thinking I developed the lesion when I had SIBO and a ton of systemic inflammation and that it is probably a one-off and not the first lesion of MS. She wants me back in 12-18 months just to be safe but for now I’m stepping off the roller coaster ride of MS I’ve been riding for the last four years and just assuming all will be well with regard to new lesion development. I’ll stick to the Wahl’s Diet and keep taking LDN since I still have myelin antibodies but I’m done stressing over every new weird symptom I seem to get thinking it is MS.
I had been a bit apprehensive over the MRI because I had indeed developed a new symptom and one that is typical with MS patients – tiredness. For a while I’ve been wiped out in the afternoon and dozing on the couch in the evenings. Yeah I get up early and I’m active but this level of being tired and having my brain shut off at around 1:30-2:00 every day was new. I’d also been having night sweats, moodiness and a few other symptoms since late last fall and just felt that my hormones were totally out of whack. Sure enough, since last November my testosterone levels have been tanking and I have well below normal levels of free and bioavailable testosterone plus my total testosterone level is getting in the range where even a by-the-book MD would say I have low-T. My first test showed a Total-T of 575, not bad, two months later it’s a 472 and a month after that 390. My free dropped from 5.43 to 4.6 in a month, dropping well below normal and my bioavailable dropped from an already low 138 to 119. I showed the results to the neurologist and she agreed and said if replacement therapy doesn’t fix the tiredness to come back and see her. I go back to the endocrinologist ND in a few weeks to discuss options. Hopefully a bit of hormone gets me going again.
The other big issue that came out of my December blood work was high cholesterol and I’ve been on a 3-month experiment trying to deal with it. I started with dietary changes, added in 500mg of Endur-Acin for 4 weeks, went to 250mg Endur-Acin for 4 weeks then went back to diet alone for 4 weeks. The 500mg Endur-Acin and diet dropped me from 295 total to 170 total in no time. When I dropped to 250mg Endur-Acin I went up slightly to 178 but now after stopping all Niacin and just going with diet I’m back up to 205. So, trying to decide if I should stay on Niacin long-term or what. Will be talking to my ND about this soon too.
Anyway, just too much focus again on health issues. I really thought I was over all this but it seems that SIBO is the gift that keeps on giving and I feel I can trace everything back to it in one way or another.