Electromyography, is it worthwhile?

[gotts1936]

Hi everyone,
I just left from an appointment with a neurologist. This was my first contact with this neurologist. During the session I showed him my leg muscles. Left leg, a soft and mushy calf muscle. Right leg, no calf muscle visible. Strange build up of muscle tissue around both knee caps. His comment was, "ya, some people believe they have muscle damage caused by statins. Your primary told me he thinks you have myopathy. I disagree". He than told me that he was going to schedule an Electromyography. If it was normal than he would schedule a MRI to see if I had spinal stenosis.

My question is, is it worthwhile to take the Electromyography? I am sure that I have mtDNA mutations which are causing the leg pain I have. What do you think? Would any of you take the Electromyography based on what we all know today?

[Ray Holder]

I think there is a tendency for medical specialties to try to keep problems which they consider to be within their particular territory just there. I have recently put a website response to a BMJ article stating just that. I suppose they have to protect their own "trade", but it doesn't really help the patient too much, and muddies the water in finding who really is able to help.

Spinal stenosis seems to be a long way off. Are you sure the build up around your knee is not fliud accumulation due to some problem there. I had this, and after a physio found a tender spot and gave it a little localised massage (palpated it), I was able to find a tender spot myself, and run my thumb over it with a little pressure and alleviate the problem cosiderably.

Ray

[David Staup]

somewhere in these forums there is a post about someone who had thier emg re-evaluated by a neurologist familiar with mitochondrial myopothy and was told the evidence was there.... the original neurologist was uninformed and said the EMG was normal....
My EMG was judged normal by another uninformed neurologist even though he witnessed the blips caused by my calf spasms...I gave up trying to get any further tests done by statin damage deniers... you make the call.

I believe harly2ride can help will have some helpful hints for you..wait for him to chime in on this

David

[cjbrooksjc]

Gotts: My new rheumatologist arranged both nerve conduction and muscle conduction electro-blah-blah tests on me, but it was so we could eliminate certain possibilities before we moved on to a muscle biopsy (no results yet). So, I guess I would say that IF he is following the same path, I understand, but if he is solely trying to confirm stenosis (and I agree with Ray that stenosis is unlikely) I would have a talk with him about what his intentions are based on the result of electromyography (what's the next step). My results showed minor muscle and nerve conduction impairment but nothing concrete, and my Dr.s next step was the biopsy.

BTW: There are two tests: NERVE conduction shows how well your nerve pathways conduct electric stimulation, and MUSCLE conduction - how well the muscle responds to stimulation (they actually listed to the sound of the muscle). Often; for insurance purposes, the office that performs the nerve conduction study should be the SAME office that performs the muscle conduction study.

Best,
Brooks

[gotts1936]

Ray, thanks for mentioning the possibility, but I am pretty sure it isn't a fluid build up. I have been researching and it might be the results of Pseudohypertrophy while on 40 mg of lovastatin. While, Pseudohypertrophy is normally a condition which enlarges organs I have found information indicating, rarely, muscle tissue can migrate to other areas of the legs, etc. Also, I agree it sounds like this neurologist has a procedure he follows and is not interested in changing it.

David, thanks for the info. I may get a second neurologist's opinion.

Brook, thanks for responding. My first test will include a EMG and conduction study. The neurologist listed the possibility of a EMG, MRI and than a muscle biopsy. Does a muscle biopsy make any sense? If the biopsy shows mitochondrial damage or mtDNA mutation, caused by a statin or otherwise, why have the biopsy? We all know there is no cure, todate. Maybe stem cells are the answer.

Again,thanks to all,
Gotts

[gotts1936]

Oh, by the way, has everyone read the paper co-authored by Beatrice Golomb, MD, Phd, citing nearly 900 studies on the adverse effects of HMG-CoA reductase inhibitors (statins), a class of drugs widely used to treat high cholesterol published 6/8/2009.
Gotts

[cjbrooksjc]

Gotts: 6/8/2009 is tomorrow. ;o)

[cjbrooksjc]

Gotts: Get the biopsy. If nothing else it confirms a condition that qualifies for insurance coverage.

Brooks

[gotts1936]

Brooks, thanks for your recommendation to get the biopsy because it qualifies for insurance coverage. At first, the nit-picker I am, I thought why worry about insurance coverage if I have a condition that, todate, is incurable? Than a voice said to me, " hey stupid, what if they find a cure "? I could not answer that question, so I will get the biopsy and if they ever find a cure I will have already been diagnosed with mitochondrial damage. Thanks again.
You did not mention if you have read " The Golomb, MD report "?

Gotts

[Biologist]

Please correct me if I'm wrong. While largely taxpayer financed (along with some personal charitable contributions in the public interest), one has to PAY to read the "The Golomb Report." Or, alternatively, one may break the law by purchasing and unlawfully disseminating or publishing it. Most of us would like to avoid that kind of thing for legal reasons -- even if the law is very counterproductive and absurd in such a case as this.

Many or most people, including clinicians, for various reasons, do not read much more than they must. For maximum exposure, most people, including doctors, would need to be "incentivized" to read such a document, which might include directly or indirectly PAYING them to read it.

Fat chance.

HOWEVER, charging for it simply buries it. That may well have been the intent.

P.S. Interesting thoughts on the biopsy/insurance issue. Where's a friendly website-posting lawyer when you need one...

Biologist

[cjbrooksjc]

Gottd: I haven't. I've spoken to her and read everything they have published to date. I probably won't get a copy unless it contains something new and startling.

Best,

Brooks

[gotts1936]

I did not pay for the Golomb, MD report. Maybe I do not, actually, have the Golomb, MD report. What I downloaded from the internet was the following: " Statin Adverse Effects: A Review of the Literature and Evidence for a Mitochondrial Mechanism " by Beatrice A. Golomb and Marcella A. Evans. It is suppose to be a 30 page article, but because of redundancy it ends up being about 82 pages. The first 30 pages concern muscle adverse effects from statins and the others pages deal with non-muscle adverse side effects.

I only downloaded the muscle adverse effects portion of the article. Anyways, I downloaded this article on " *www.medscape.com " and searched for statin adverse effects/golomb.

I would not be surprised to learn much of this artice is from the golomb report. Check it out and let me know what you think.

gotts

[Allen1]

Hi there Gotts,

that is a great link and search, I just did a free sign up and now have access to all kinds of stuff. Excellent is not a good enough word for this, many thanks for showing the way :wink:

All the best,
Allen :)

[David Staup]

ditto what Allen said

David

[cjbrooksjc]

Gotts:
I lied. I DID read this. But it bears reintroduction for those who did not. Thanks.

Best
Brooks

[gotts1936]

Brooks, are you sure you read the recent Golomb, MD report from Medscape.com. my info says it was published 6-8-2009?

Gotts

[cjbrooksjc]

Gotts: I looked again, and this text is entirely familiar to me. The text I read previously did not have the auto-link elements (which I find extremely helpful), but It reads the same. I read it early this year. I think perhaps the MEDSCAPE publishing date is 6/8/9. Its a good, solid read though and I like the way its laid out electronically - makes it so much easier to navigate.

Brooks