ALS or statin-related ALS-Like Syndrome

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

ALS or statin-related ALS-Like Syndrome

Postby 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!
Nancy W
 
Posts: 139
Joined: Thu Sep 03, 2009 11:22 pm
Location: Bonney Lake, Washington

Re: ALS or statin-related ALS-Like Syndrome

Postby David Staup » Mon Apr 11, 2016 11:52 am

NANCY
So the dolichol didn't help?

again I ask... have you tried the low dose Benadryl
David Staup
 
Posts: 546
Joined: Wed Nov 28, 2007 1:13 pm
Location: granbury, texas

Re: ALS or statin-related ALS-Like Syndrome

Postby Nancy W » Mon Apr 11, 2016 3:33 pm

Hi David,

Actually I was one of five people it did help.

In my case, the most obvious thing the dolichol did was slow down the progression. Last summer, on the placebo, my symptoms went on, unabated. Worse and worse. then for the three months I was on the dolichol, there were few changes for the worse...I would say a plateau, maybe even a little better. But once the study was over, the progression started right up within about a week to two weeks and I got much worse. Weakness progressed to all four extremities, lost coordination in my hands, gait is very wobbly and I fatigue very easily. I have written to the folks in Australia and am waiting for a reply to see how to get more dolichol.

I did, at one point try the benadryl...but did not feel any difference. Is it still helping you? If so, how much are you taking?
Nancy W
 
Posts: 139
Joined: Thu Sep 03, 2009 11:22 pm
Location: Bonney Lake, Washington

Re: ALS or statin-related ALS-Like Syndrome

Postby David Staup » Mon Apr 11, 2016 4:17 pm

I am coming up on 4 years. I now take 4 ml (10 mg) 4 times per 24 hrs. I am not sure I need to take it that often, most people seem to do well on 1 mg per 15 lbs twice per 24 hours.

I have no fatigue generally, my cognitive abilities are back to normal, and my memory is arguably better than ever, although there are some things, at 65, I'd rather forget... chuckle

I sleep 7 to 8 hours undisturbed.

I do still have some problems with specific muscles that limit me but those problems have been with me since before the statins, gotten worse while on statins, never fully recovered.
I still take supplements and can feel the difference when I stop.

David
David Staup
 
Posts: 546
Joined: Wed Nov 28, 2007 1:13 pm
Location: granbury, texas

Re: ALS or statin-related ALS-Like Syndrome

Postby Nancy W » Sun Apr 24, 2016 9:59 am

Happy Birthday (a few days late)! Thanks for the reminder about Benadryl, David. I got reminded last night because of something that happened to me...was preparing and sautéing fiddle neck ferns for the veggie we were having with salmon for supper. I decided to test one. It was initially yummy, then I noticed a bitter taste, then suddenly I started gagging, and my throat was closing up. I told my husband to call 911, but he stood frozen watching me gasp...so I took matters into my own hands, chewing up two kids Benadryl, and finding my inhaler after a frantic search...saving my own life...so today I will start on the regimen you suggested. To tell you the truth, since I am in the field of complementary medicine, and teach at a naturopathic university, I get a lot of advice on what to take and what to do...my only rule for myself is "one thing at a time." Otherwise I won't know what is working.

I am, among others, seeing an experienced naturopath, who has a way of testing what a body needs and wants...she has come up with some good suggestions thus far, and I am feeling a bit more energy with her suggestions. But, I am still very weak...still fasciculating, especially when I first awaken. Still have muscle spasms, stiffness in the AM, and pain. I will have her "test" the Benadryl. I see the neurologist again on Tuesday. This time for a repeat EMG, plus I am going to ask whether a biopsy would be useful. He is still trying to rule ALS in or out. When he saw me in January, he did an EMG and NCV and said he didn't think it was ALS. When he saw me in March, he admitted that the EMG had shown characteristic damage/weakness in my legs, left worse than right. He ordered and I have had an MRI of my spine, looking to rule out spinal stenosis. He ruled it out. I had the Western Blot test done for Lyme, and it was negative, but now I have read that that test is completely unreliable. So I will ask for a newer test...The interesting thing about Lyme, is that the symptoms, while sometimes similar to ALS symptoms, are not necessarily caused by bacteria...but perhaps viruses, so the antibiotic cure doesn't always work. Curing the virus is another thing all together...It would be useful to rule out appropriately.

Figuring all this out is a crazy process...diagnosing by exclusion. Meanwhile, I bought a cane yesterday, after nearly falling down the stairs from our house...

In Dr. Graveline's newest post, he is talking about muscles and pain, and the fact that some muscle tendon ruptures are being noted, similar to the side effects of Fluoroquinolones, which I was also on, for long period of time after diverticulitis. When I walk on uneven terrain, I sometimes feel like muscle fibers are tearing...

And on the topic of our previous communication, I have talked with Dr. Soultanov, who is the creator of the dolichol that was used in the study. He is analyzing my history and the interview I had with him, and will be getting back to me. He is in Australia. He thinks he can "help" me...that would be great! It would, at a minimum, be interesting to take the dolichol again and see if it calms all the fasciculation, as it did last winter...and slows the progression of weakness, which has picked up since I got off of the dolichol.

I will let you know what I figure out about the Benadryl.

Nancy
Nancy W
 
Posts: 139
Joined: Thu Sep 03, 2009 11:22 pm
Location: Bonney Lake, Washington

Re: ALS or statin-related ALS-Like Syndrome

Postby David Staup » Sun Apr 24, 2016 11:39 am

Nancy it's low dose Benadryl!

I'm currently working with a lyme group on yahoo. I just found an opening to discuss Benadryl and there are some very astute people in that group. I can give you a contact name if you like.
Just as statins can cause mitochondrial mutations, in some people, resulting in long term problems such as we see, so does lyme cause mito mutations and the same long term problems. Do a search on lyme and mito dysfunction.

David
David Staup
 
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Joined: Wed Nov 28, 2007 1:13 pm
Location: granbury, texas


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