will emg show muscle damage from statin?

[NancyMJK]

I was prescribed simvastatin in Sept 2012 but was also taking nefazodone at the time which i have read should not be combined. Four times I was at the doctors and once at the ER with side effects and no one told me to stop simvastatin, or the other drug for that matter. When I could not sleep or walk good due to hip and shoulder pain, I stopped taking the statin after researching online. I had stopped the nefazodone in Jan 2013 when a pharmacist told me I should not be mixing them. I stopped the statin in April 2013. The doctors are diagnosing me with Fibromyalgia and I am sure it is caused by the statin since I was perfectly healthy before the statin. The last doctor I saw said he would do an EMG but did not say he would do a muscle biopsy that I requested. Will the EMG show that this is not Fibromyalgia? This is really a nightmare and I wish I had never taken the statin.

[David Staup]

Yea well that depends on the doctor reading the study. Mitochondrial problems (statin damage) show very subtle differences in EMGs. You need to make sure that he is familiar or you'll get what I got: I was, according to the report, "essentially normal"...

You may be able to find the RIGHT neurologist to do the study by asking at a local MDA office if you have one near.

David

[Nancy W]

I haven't been on this site for a while...I had posted an update, then my life seemed to go along on what seemed to be a good plateau. I am 65 now. It has been about 6 years since my statin misadventure with Red Yeast Rice, and at least 15 years since my first statin misadventure with Lipitor. And now...in the middle of the night, I had a not so happy epiphany... Here is the story. About a year ago, I was having "charley-horses" in my calves. I took magnesium glycinate, and that seemed to take care of that problem. I still take ubiquinol, vitamin D3, fish oils, and high quality vitamin and mineral supplements, things that helped after the neuropathy started. The recovery from the neuropathy went fairly well, with the residual being numbness in the tips of my toes, and less than normal sensation from my knees down, and in my finger tips. I have a Raynaud's like phenomenon in hands and feet, not too severe, but I definitely have cold hands and feet, and like to keep them covered in the winter. Back to the muscle spasms. I noticed last summer, a strange twitching in the muscles along my spine...it would come and go. Then, I would say, over the last few months, I would awake at night with some twitching in muscles here and there, primarily legs, but also internal, like in the pelvic musculature. Am I weaker? Well, I would say not that I can tell...I haven't been exercising as much as sometimes, BUT...here is the kicker: I have fallen flat on my face four times in the last 9 months, after stepping on small hard objects, mostly rocks, once it was pecans in TX. I blamed this, at least partially, on the fact that I was wearing a new model of Dansk clogs, which are cushier, thereby blunting the sensation of what I was walking on. Along with already diminished sensation. I am a PT, and I know that the primary balance response comes from a reflex loop which begins in the ankle. So I figured that was damaged by the neuropathy and quit wearing the clogs. So far no more falls. I have been on the Spacedoc FB site, and reading about Dr. Graveline's thoughts about the new dolichol study...so I guess my mind has been cogitating on this subconsciously. After taking the magnesium, per usual, before bed, I awoke at 2:30, and realized that all this twitching has actually been getting steadily worse. Not so much in my arms, but from about T-12 and down...I wrote to Dr. G. I got on here to read about anyone else's experience with these symptoms...also, whether any of you who have gone on to have ALS-like issues...wondering what your symptoms were/are and what you think the next step would be...I have been reading about "normal" EMG results...anyone aware of an understanding functional medicine doc somewhere? Any thoughts welcome...

[David Staup]

ALS or ALS like syndrome:
muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing, twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
impairment of the use of the arms and legs,"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and swallowing.
*http://www.informaworld.com/smpp/content~db=all?content=10.1080/17482960802031092
*http://www.ncbi.nlm.nih.gov/pubmed/17536877

the above is from the statin AE symptom list located here:
viewtopic.php?f=1&t=2019

as for your emg, the following is from the post in this thread directly above your post:

"Yea well that depends on the doctor reading the study. Mitochondrial problems (statin damage) show very subtle differences in EMGs. You need to make sure that he is familiar or you'll get what I got: I was, according to the report, "essentially normal"...

You may be able to find the RIGHT neurologist to do the study by asking at a local MDA office if you have one near."

My ALS-like symptoms were limited to twitching and cramping, some speech and breathing problems, with occasional swallowing problems, but they're gone now for the most part. I have had cold hands and feet for all of my life...until 18 months after I started low dose Benadryl.

[Nancy W]

Hi David, and thanks for your reply...I am just now getting back to it. I have had a busy Spring. No more falls, gave up the clogs, but do realize what I had said about absent balance reactions is still true. I am wearing absolutely flat shoes, with not much of a sole, so I can feel the ground better. But, if I close my eyes in the shower, my balance isn't great, nor is my one-footed balance. I saw a friend who is a classical osteopath when I was in New Mexico, she felt the fasciculations were due, in part to what she called a prolapse of my spinal cord (I have never heard of this before), and after the osteopathic treatment, I was better for a couple of months...but the fasciculations are back. I am walking the dog several times a day, and have been able to work up to a couple of miles over the course of a day...but I notice weakness climbing stairs. I have been chatting over these last months with Dr. G., and although I missed the initial opportunity to get on the dolichol study, some people dropped out, and so it looks like I am in. Waiting to get the particulars. In the last few days, increased painful neuropathy. Awake in the night with it tonight, trying to think if I ate or took anything new or different that would have set this off...it has now been six years since my neuropathy began with the RYR, and 15-16 years since muscle issues and elevated liver enzymes with Lipitor. Ugh.

By the way, David, I believe I owe you a belated Happy Birthday!

[David Staup]

have you seen my reply on the dolichol study?

viewtopic.php?f=1&t=2939#p13740
I will be interested in your take



have you seen my posts on low dose Benadryl?

viewtopic.php?f=1&t=1961



good memory on my birthday...I don't recall telling you

thanks

[Nancy W]

Hi David...

Just posted on progression of my symptoms...are you on the Facebook site, Stopped Our Statins? There is a thread there about Necrotizing Myositis...

I am on the Dolichol Study. In my second month of six (with a month off after three months, then three more months with a change in the substance I am taking, one being a placebo). No improvement in symptoms yet...if anything, worse.

I have read your thread with Biologist about the Benadryl. Are you still on it? Just curious as to how you are doing? As this neuromuscular damage is progressing, I am curious about others who are experiencing progression of symptoms...what kind of docs have you seen for your weakness? I am thinking of finding someone who is well-versed in near-muscular diagnosis, and, at a minimum, getting a baseline.

We moved out of our big house a year ago to a smaller house in a 55+ community. It is not completely accessible, but everything we need is on one floor (guest room upstairs, which my husband uses as his office, he works at home), with two steps to garage, with a grab bar. Getting railings on front steps as well. If I had been having these symptoms a year ago, would not have bought this house...

Nancy Witt

[David Staup]

Kiddo I'm not seeing any docs for any reason other that to get my script for amour thyroid... the first misdiagnosis from the statin damage was hyperthyroid and they nuked my thyroid.
As to my condition re weakness and fatigue....low dose Benadryl
Read again my observations, specifically go to page three here and scroll down to 7 month update and on from there.
viewtopic.php?f=1&t=1961&start=40

I really should do another update because I have noted another round of improvements.... especially in my memory. Both long term and short term memory are improved to the point that I suspect they work better than at any time previously in my life. This is not always a good thing, chuckle

were it not for my tendency to, shall I say, probe my limits, I could forget I am disabled.

[Nancy W]

David, Thanks for your reply.

I am up in the middle of the night, as I often have been this summer, secondary to the muscle twitches, which I experience randomly, all over my body, but more in my legs, less in my arms. It seems as though I feel twitches internally, a lot seem to be in my diaphragm, as well as in my pelvis. Sometimes feels as though my guts are twitching, though I think it is various levels of my abdominal muscles. Some nights I go to stretch out in the bed,or roll over and have a very painful spasm of my entire leg (right more involved than left). My mouth will twitch, as will the other end of my digestive tract at the sphincter.

With the good weather Seattle has had, I have made a big effort to get out and walk. I try for 10,000 steps a day, reaching that goal an average of five times a week...I even did a significant hike on Mt. Rainier with my husband (1800 feet up and down...wiped out at the end, but happy, because i we had made it to the place where I had scattered my first husbands ashes after he died of melanoma in 1978.) BUT, compared to when we moved here, exactly a year ago, and even ten weeks ago, I am struggling to do some the walks that involve hills. I have also been trying to do some organizing, including moving some files and boxes around. I was completely wiped out, after, but couldn't sleep due to the muscle issues. I am awake more nights than I sleep and it is not so much pain in my muscles as a weird, sick sort of feeling...apoptosis?

I did read your thread of posts. Do you still do the LDB? And if so, at 20% of the dose? Any thoughts? I am taking the usual: fish oil, CoQ10, electrolytes (magnesium glycerinate, calcium phosphate, using Himalayan salt, doing epsom salt baths or magnesium lotion.

I have been working with my naturopath to balance my electrolytes and hopefully improve the issues I am having...using a testing device he has, I improved from the previous visit a month earlier in the summer...but now, seem worse...

This is truly beginning to interfere with my sleep (not good) and my life...we are supposed to go for 10 days to Cancun in October...and here, in the middle of the night, wide awake and uncomfortable, I don't know...I am, frankly, scared.

How are you doing?

[David Staup]

I take LDB 4 times every day, every 6 hours, currently 1 mg per 20 lbs.

Nancy, one of my neighbors has had 2 injuries, one required surgery and physical therapy and a second that required only pt. He recovered, both times, in a fraction of the expected times. He didn't tell them about the LDB the first time ... he thought it was a secret, so I wrote up something for him on the benefits of LDB for trauma recovery for both his doctor and therapist... The second time they new what they were seeing and reacted by telling my neighbor NOT to ay anything to other patients.....

His mother is the one I described HERE:

viewtopic.php?f=16&t=1999


the last post

David

[David Staup]

One more thing you've probably missed ... LDB feedback

viewtopic.php?f=1&t=2915