First time poster - questionable diagnosis and have some questions

[Guest guest]

Hi guys,and gals,

I just want to remind you and let Randall know that some NP's or Natural paths

and or Chiropractors are willing to order a supply which they get at

pharmaceutical rates. Mine did and my Sister's did. It's worth an ask. Then

they can distribute what you can afford as you need it. Yes, some may make a

profit, but buying 1000 or more at a time does two things,

1) Puts you into bankruptcy

2) They do have a shelf life and if they compact at all they are no longer as

effective!

:-) Just my .02

Thanks,

Elle

Randall Bosin ranbo1@...> wrote:

Hi Laurie, I went to check out CoQ10 on Tishcon and Epic websites.

Talked with someone at Epic who says they give a small discount to Mito persons,

haven't been able to reach anyone at Tishcon so far. Does Tishcon sell CoQ10

directly or only through places like Epic? Their website lists Epic and a few

other sites as how to order the CoQ10. Epic's is very expensive, even with

discount, though he claimed it is far superior to any other brand because it is

water soluble rather than the usual fat soluble. Does this sound right? Money is

an issue, especially for something that may or may not help a condition which I

still am dubious that I actually have!

Thanks

Randall

Re: First time poster - questionable diagnosis and have some

questions

Randell

Welcome to the group.

Yes, I have weakness and twitching, but not of the tongue.

Pyruvate and lactate can be normal, but the ratio can be abnormal or

as in your case, one normal and the other abnormal, but again, it is

the ratio that is most important.

I get my CoQ10 from Tishcon. If you have mito and call them, you can

get a discount. It is still expensive, but this kind is more

bioavailable, so more CoQ gets into the system. I am probably not the

norm, but I take 240 mg. four times a day or a total of 960 mg per

day. Some docs are now saying that unless you take enough, you might

as well not waste your money. Others say that you should take 5-10 mg.

per kilo of bosy weight. My personal experience is that I noticed

changes when I got up to that level.

laurie

>

> Hi,

>

> Just joined and this is my first post. Have been having muscle problems

> for years and one neurologist (out of the many I've seen) thought I

> might have Mitochondrial Myopathy (MM) back in 96 or so. Saw him

> recently because of increase in symptoms and he again reiterated that he

> thinks I might have MM. The evidence for this diagnosis is pretty

> spotty - a questionable finding on muscle biopsy in 95 of mitochondrial

> proliferation and possible excess lipid (disputed by 2 other hospitals

> that reviewed it and biopsy in 88 was considered normal), slightly

> reduced NADH on respiratory enzyme study of biopsy and an occasionally

> elevated serum pyruvate level (but lactate has never been clearly

> elevated).

>

> I have had mild, fluctuating muscle weakness going back about 25 years,

> as well as intermittent problems swallowing and with speech, and even

> breathing (with fluctuating pulmonary studies). In the 80's I had 2

> EMGs that suggested ALS or motor neuron disease but most EMGS, including

> the most recent ones, have been basically normal. However, I have a lot

> of twitching and possibly some atrophy, so am concerned I have ALS or

> some motor neuron disease rather than MM. Of most concern is noticing

> what appears to be changes in surface of tongue - increased irregularity

> that I think is the kind of atrophy seen in ALS. I'm skeptical of

> the MM dx (as where other neurologists back in the 90's when this neuro

> first suggested it. This neuro is a neuromuscular specialist who now

> heads an MDA clinic.

>

> So with this long-winded introduction, would like to ask these

> questions: Anyone with MM have weakness, twitching or atrophy of the

> tongue or atrophy elsewhere? Anyone with MM thought to have ALS by

> neurologists at some point? Anyone with occasionally elevated pyruvate

> but not lactate? Neurologist suggested (again) I take antioxidant

> cocktail, particularly CoQ10. This can be rather expensive, so can

> anyone suggest a place to get it (and possibly other supplements) at

> reasonable cost, but still good quality? What doses are people taking

> it at? Read that Idebenone (derivative of CoQ10) is cheaper and

> possibly more effective than CoQ10. Anyone using it instead?

>

> Thanks for any feedback

>

> Randall

>

>

>