by Nancy W » Sun Apr 10, 2016 11:08 am
I have been reading and posting on spacedoc.com for almost 7 years. Initially I came to this page because I had developed severe polyneuropathy just one month into taking Red Yeast Rice (suggested by my cardiologist, since I had had issues with Lipitor years before - myopathy/pain after only one month on Lipitor. Same old story: cardiologist orders blood test for cholesterol levels, declares mine to be high, and pushes statins. Unfortunately, even though I am a physical therapist, as well as a medical social worker, I had never heard any of the stories about statins, until I found spacedoc.com. Well the years have gone by, 17 years since the Lipitor exposure, and 7 years since the Red Yeast Rice exposure. I quit both drugs immediately with onset of side-effect symptoms. It took three months to get over the muscle pain from one month of Lipitor, and three years for the neuropathy to (partially) resolve and stabilize, with a residual of numbness, and sometimes pain, in my toes. But, it appears that was only the beginning of my problems. Two years ago, I started experiencing isolated twitching of some muscles next to my spine. In the year that followed, I was under a lot of stress, primarily caused by moving, and then having to commute 5 hours round trip, in Seattle's terrible traffic, to and from my physical practice. After a year of the isolated twitching and two falls, the twitching generalized to my entire body. That got my attention. That was a year ago. In the last year, I suffered severe insomnia, and the only relief I got came from medical marijuana, with which I could sleep. Beginning last summer, I was suffering from fatigue, and evidence of weakening. At the point that this started I was walking 10-15K steps a day, including up and down the mountainous ridges near our home. But when my husband and I undertook a serious hike on Mt. Rainier, I discovered that I could walk 20 feet uphill and have to stop...I repeated this for two miles and 1,200 feet elevation gain. I was determined to do it. Going down, I could barely walk, I was a mass of quivering muscles. That was last June, and since then I have had dramatically escalating muscle weakness, muscle pain, spasticity (hyper-reflexes), poor balance with more falls, and profound fatigue with exercise or just walking. My posture, by day's end, makes me look 30 years older...I am bent way over and can't straighten up. I can barely support my own weight. Some days I struggle to walk 200 feet...I have been seeing a neurologist whose specialty is neuromuscular diseases, including ALS. Diagnosing ALS is a process of eliminating everything else it might be...first blood work to eliminate things that cause known "ALS-mimics, then electromyography to look at muscle function, as well as nerve conduction velocity studies to assess nerve function. At this point the neurologist said he was uncertain about ALS, but that something was wrong, and he wanted to follow closely. I returned to him two weeks ago, and he was astonished with how weak I was getting. My husband and I read some books about statin toxicity, and ALS, and started to work on detoxing, buying a Far Infra Red Sauna, and cleaning up our diet completely (It was already pretty clean.) We added two more air filters to our house, knowing it is only 18 months old, and is certainly still off-gassing from the manufactured wood floors, and cabinets, and the carpets, as well as painted with paints that have VOC's in them). We added water filters to our shower, already filtering our water for cooking. After telling us that he was thinking it wasn't ALS when he had completed the EMG and NCV, the neurologist allowed that actually the EMG did show some damage. He sent me for blood work to check for Lyme (test reports negative, but some of the numbers were 'equivocal', (so could that mean I may have some Lyme? Don't know) as well as an MRI of most of my spine, which showed some degenerative changes such as arthritis, and spinal disc drying (desiccation-common in older people), but he was looking for stenosis, which could produce ALS-like weakness, and I did not have stenosis. I will go back to him for his read on all of this in two and a half weeks. but in the mean time, I saw a naturopath, whose specialty, for nearly 30 years, is assessing and treating people for toxicity. She did some manual testing, as well as testing for heavy metal exposure, the results of which will be back this coming week. But with the simple testing she did, she asked if I had ever had exposure to known environmental toxins. I then remembered staying at my grandparents home in Tampa for all the summers between when I was a baby up until at least 12 years old. Trucks would come around every night fogging/spraying DDT to kill mosquitoes. The naturopath said, environmental toxins get into the fat cells and stay. She said that I was "so toxic" that my body could not deal with our attempts at taking the right supplements, could not deal with the sauna...it also turns out I have the genetic condition MTHFR, which 47% of the population has, which can mean that a person cannot clear toxins normally. Evidence for MTHFR being a co-factor in development of ALS is mounting, as well. She tested to see whether the supplements I was actually taking were helpful, and the answer was no, so she took me off all of them, and put me on a form of glutathione which the body can use, as well as a liver cleanse tonic, and homeopathic folate (due to my MTHFR). I am in my fifth day of this regimen...and so far, one thing stands out: no pain! I am still walking like a very old lady, but I can go further than I have been able to go, albeit very slowly. And yesterday, I even gardened a bit. For me, all these signs are hopeful. I have been weak for months now, so I am hopeful that something is changing for the better...It will be interesting to see how this goes. I know that the neurologist has run out of tests, having excluded all he can exclude...which could lead to a diagnosis of ALS by month's end. BUT perhaps I will continue to improve with the help of the naturopath. There is one other possible factor in all this...as someone with MTHFR, I also have trouble tolerating other medications, among which were fluoroquinolones, which I was on for nearly a year due to misdiagnosed peritonitis. It saved my life, but eventually I figured out it was neurotoxic to me. Fluoroquinolones now have a "black box" warning. So who knows? Perhaps this ties to my MTHFR and the malfunctioning of the waste-removing channels in my body (and liver). Which might be a reason for the overall toxicity. We are living in a world full of chemicals. Living with the knowledge of my symptoms being the same as the symptom list for ALS is terrifying. I was not prepared to have my life and function foreshortened at 66. I still have "high" cholesterol, and if I look back over the generations in my family, there is a solid history of women, on both sides, whose build is like mine, i.e., not really thin, who lived well into their 90's. I am being told my high cholesterol is familial, and they "need" to use statins, to which I say something like "#&*^@" Time will tall!