What tests are actually productive?

[equestrian]

More informed board members: I constantly see posts where members have had numerous tests to no avail, all coming back "normal", thus reinforcing the notion that there is no statin problem, only in the mind of the alleged sufferer. I have excruciating neuropathy, diagnosed at last by an allergist. When I saw a neurologist he agreed that maybe I had pain, certainly not statin-induced and not neuropathy. He ordered an upcoming MRI and EMG. I don't expect anything productive from these. What exactly does yield some diagnostic evidence? Please, anyone!! Cymbalta, starting at 30 mg and increasing to 60 mg has been of benefit but certainly has not eliminated the problem, has taken the pain probably from a 10 to a 5-6. I appreciate any and all input.

This is compliments of Vytorin over long term and started out as an itch, progressed to a more severe extensive, itch and then went to radioactive burning. It has been happening over more than 3 years but only figured it out within the last month and doctors look at me like I have 3 heads but certainly not statin problems!!!

Thanks in advance to all,

Equestrian

[pnisthepits]

I have had every test in the book..went to Mayos twice..there is no test that will say its statin induced...its a elimination thing....I also have pain...I take 75 mg of lyrica twice a day and cymbalta 60 once a day..and still get pain breakthroughs that have to be dealt with by propoxyphene....I certain sympathize with you.

[equestrian]

Thanks, comment about Lyrica alone was helpful. I was wondering about it. Equestrian

[harley2ride]

Dr. Phillips at Scripps Memorial, in San Diego, was able to diagnose mine, after an Oxygen Exchange test, muscle biopsy, and emg results. But I'm not all that sure that it was worth spending the $60,000.00 out of pocket that it cost, just to get a name for what I have. I was already taking coq10, lcarnatine, b12, and they were helping with the symptoms. If I had it to do over again, I would have foregone all the tests.

[equestrian]

Harley - would you be so kind as to let me know in what dosages and at what escalations?

Thanks

[harley2ride]

I'm taking this supplement:NSI® Mitochondrial Energy Booster with 200 mg of CoQ10 enhances energy and supports cardiovascular health.



How does NSI® Mitochondrial Energy Booster with 200 mg work?
NSI® Mitochondrial Energy Booster with 200 mg of CoQ10 is a powerful formulation that helps boost energy at the cellular level. It contains Acetyl L-carnitine which helps transport fat through the cell membrane where it is more efficiently utilized in the mitochondria of the cell.

This product also contains Coenzyme Q10 (CoQ10), or ubiquinone, a naturally-occurring, vitamin-like nutrient. In its highest concentration, CoQ10 is found in cell mitochondria where energy is produced. This versatile antioxidant supports heart function and helps to convert food and oxygen into energy. It may support healthy blood pressure and cholesterol levels as well as a healthy immune system.


NSI® Mitochondrial Energy Booster with 200 mg is better because it:
-- Offers a powerful combination of energy boosting vitamins and nutrients
-- Is a better value when compared to other brands



Supplement Facts
Serving Size: 4 Capsules
Servings per Container: 30
Amount Per Serving % Daily Value

Vitamin D-3 (cholecalciferol) 800 IU 200%

Vitamin E (d-alpha tocopherol succinate) 100 IU 333%

Vitamin B1 (as thiamine HCl) 50 mg 3333%

Vitamin B2 (as riboflavin) 50 mg 2941%

Vitamin B3 (as niacinamide) 50 mg 250%

Vitamin B6 (as pyridoxine HCl) 50 mg 2500%

Folic Acid 800 mcg 200%

Vitamin B-12 (as methylcobalamin) 1 mg 16666%

Magnesium (as oxide, citrate) 200 mg 50%

Selenium (as L-selenomethionine) Selenium SeLECT 200 mcg 286%

Chromium (as polynicotinate) ChromeMate 200 mcg 167%

Acetyl L-Carnitine HCl 1000 mg *

Alpha Lipoic Acid 300 mg *

Coenzyme Q-10 (ubiquinone, USP) naturally fermented 200 mg *

Benfotiamine 150 mg *

And, on top of that, I'm taking 150mg a day of Lyrica, one baby asprin, 3000mg of fish oil, and I recently had to add 200mg of coq10.
And I do have diagnosed Mitochondrial Myopathy, which is a little different from basic Statin Myopathy. For a long time, I took individual supplements (about 20pills a day). I noticed no difference by switching to the Mitochondrial booster. It gained me not having to take so many pills each day.

[gotts1936]

Harley2ride, and, after taking all those supplements are your statin drug disabilities corrected. If not, what's the point?

[harley2ride]

[quote="gotts1936"]Harley2ride, and, after taking all those supplements are your statin drug disabilities corrected. If not, what's the point?[/quote]

I sure can't say they are corrected, but it's akin to taking Excedrin Migraine, for a Migraine headache. It eases the problem for the time being. Simply skipping one day of my meds, puts me into where I am in a lot of pain, get weak faster, muscle spasms return. They most definately help. Without them, I don't think I would be able to go on...

Nothing can ever correct my condition. But everything I'm taking, makes things about 75% better, for the most part. I still have good days and bad days, but at least now, I DO have a few good days. The drawback to that, is that when I do have good days, I tend to overdo things, and end up paying for it in the long run.

[gotts1936]

Harley2ride, I hope you do not think I am picking on you? If you do I apologize. If the supplements you are taking gives you relief I am happy for you, but I agree with you, sometimes I feel alittle better and over due it, like mowing the lawn and than I suffer all night and can not sleep due to the pain. Whoever did this to us should have to pay for the supplements we have to take to relieve our pain. I guess we are just stuck between a rock and a hard place.

[equestrian]

Thanks for the supplement info. I placed an order yesterday. Today I saw the allergist who made the correct diagnosis. I asked him where I could get some legitimate help. He suggested that I contact Dr. Golomb at UCSD and see if she knew of anyone in my (Atlanta) area. There is a pathetic lack of information on the part of the medical community and an excessive ability to condescend.

[harley2ride]

gotts: No, didn't think you were picking on me.. I fully agree that at an absolute minimum, these drug companies should be paying for our medical, our supplements, and all doctor bills past and present..

equestrian: I couldn't agree more. It has been 3 years or more, since I started my fun and games with all the doctors, and even today, I'm amazed that there are many doctors out there who still don't know 1/2 of what some of us know. To me, that is just unacceptable. I understand that doctors are busy, and can't be expected to learn EVERYTHING, but they should at least have the sense to ask/confer with pharmasist or specialists, when their patients come to them with concerns.. I fear that most of them have forgotten/foresaken their oaths.. Seems doctors are going the way of politicians.

[cjbrooksjc]

equestrian: Often Statin damage is evidenced in the mitochondria. Tests for Mito Myopathy may be productive. BUT - until they can offer me a tested/confirmed remedy (following the diagnosis) other than the supplements we are all currently taking, I'm not willing to spend anything else (let alone $60K - SHINOLA!!). I KNOW what my problem is; NOOO DOUBT ABOUT IT! I'm just waiting for the magic bullet... hmmm, maybe magic PILL is a better choice of words.

Brooks

[Brian C.]

Oh no Brooks, don't talk about "Magic Bullets" or "Magic Pills", that's Pharma-talk! All we can do is allow our bodies the nutrients we need and avoid further harm.

harley2ride : I don't think oath-taking has been part of doctor training for a long time. Good heavens, that might encourage integrity and, as we know to our cost, integrity is bad for business.

Brian.

[cjbrooksjc]

Brian: Yes, how short-sighted of me. Of course it makes sense that Big Pharma would eventually notice our plight and offer up another 'little dutch boy (or girl)' to put their finger in the dike --- for a handsome fee. What a business and what an obvious maxim: "Make 'em sick - make 'em better - make a boatload"

Maybe we should consider more the pixie/brownie/sprite sort of magic?!

Brooks

[Brian C.]

May I correct...

"Make 'em sick - keep 'em sick - make a boatload"

That, I'm afraid is the correct business model.
Repeat custom.


Brian.