too-long rant, and Re: mito cocktail

[Guest guest]

Sorry just read your post today.

I guess it is personal preference (and the fact that I'm not sure

where my copy of the list is at right now) on my part. Is anyone

aware of this list (or a similar one) being listed on the UMDF site?

I don't know if it is a trade secret or something, but I haven't

asked him, and as I said, I don't have the document in front of me to

see if they list any confidentiality issues about the list.

I really don't want to retell the story of my past 10 years dealing

with this illness, suffice it to say they are similar experiences to

yours ('cept maybe you didn't give birth to three kids in that time).

YMMV, IMHO, my epiphany came when I decided to travel more than 1,000

miles to see Dr. Shoffner in Atlanta - no matter what anyone on this

list could tell me, I still needed a doctor (an MDA neurologist) to

refer me to him, and to visit him myself for a consult and fresh

muscle biopsy. I now realize that I should have traveled to a

national mito specialist (as listed on UMDF's site I believe) much

earlier, actually once I started having abnormal lactate/pyruvate

ratios I think (I have seen more than 20 doctors total, some of whom

kept following me up with the wrong diagnosis, others who told me to

see a psychiatrist for my psychosomatic symptoms like muscle

weakness).

I've gone through a lot, and I appreciate those who take time to

validate my own struggles through listing their experiences. Feel

free to share your thoughts and feelings.

Take care,

RH

>

> Hi RH

>

> I REALLY hope this doesn't come across as quarrelsome, but I cannot

for the

> life of me decipher why you would not feel comfortable posting a

list of 15

> substances, or why for that matter it would take that much time. You

> yourself mentioned CoQ10, and I suspect Carnitine is another, and

presumably

> many others are just OTC vitamins. Is Dr. Shoffner's list

copyrighted, or a

> trade secret, or something? I understand that I should consult with

a

> doctor, etc. But people in this forum talk of all kinds of meds for

thyroid

> and other conditions, for example. What's the issue with this

particular

> list of 15?

>

> By the way, I spent two years unearthing ON MY OWN that I actually

have a

> mito disorder, despite seeing numerous doctors and having two

surgeries. I

> then spent the next four years trying to get hooked into any

specialist

> doctor who knows anything at all about mito. This has been an

incredibly

> bizzarre story of delays, confusion, and useless referrals to any

number of

> doctors. When I was finally referred to one last FEBRUARY, I

thought my

> problems were, well not exactly over, but I had some hope. I was

given an

> initial appointment in SEPTEMBER. The day before that appointment,

after I

> had made all sorts of arrangements to get to the appointment, the

> receptionist called to say that the doctor was out of the country

(I later

> found out that this was for a conference, which I really doubt had

come up

> just THAT DAY). When I finally did see this doctor, he told me that

he would

> have a battery of tests for me, details of which he would email

within a

> week. That was four weeks ago. When I called, the receptionist told

me that,

> you guessed it, he was again out of the country, and would return

this

> coming Oct. 25, six weeks after my appointment. I'm not holding my

breath

> that he will be getting back to me soon. And this is just for the

TESTS he

> wants to do, so he can write another case-study for a journal. He

did tell

> me that there probably wasn't any actual treatment he could offer.

He seemed

> only mildly interested in the fact that I have had constant horrible

> headaches, severe dizziness and several outright faintings, and

bouts of

> chest pains.

>

> After at least getting a diagnosis, I lost my health insurance when

I

> couldn't work anymore, four years ago. I have been so completely

> incapacitated that it has taken me a very long time to complete the

forms

> for disability and health coverage, and this is only recently moving

> forward. I have been nearly homeless for two years. I have had

crazy-making

> lawsuits (another bizzarre story) by my ex-wife that have stripped

my tiny

> savings. I don't exactly have a " doctor " , unless I pay my former

PCP (like I

> did, a couple of weeks ago) to listen to me, commiserate, and

ultimately

> tell me nothing I haven't already found out by extensive online

research and

> forum participation, and studying neurology and metabolism

textbooks.

>

> So I hope that you can imagine my reaction when you say " Perhaps

your doctor

> can get a mito doctor to do a consultation " .

>

> I once saw a doctor who refused MY very humble hopes to somehow

help out,

> with self-observations. He said that there should only be

one " driver " of

> the " car " , and that he should be the one. I said I could help a

little maybe

> (after all, wasn't it I who had brought my own mito condition to HIS

> attention?), and he said " he didn't need me to read the map, and he

would

> appreciate it if I didn't play with the radio while he drove " . This

was a

> chief of neurology at a major teaching hospital. I also told him

that I had

> sky-high triglycerides but oddly low HDL, and he said " Welcome to

America "

> which I took to mean that he was essentially indifferent to

our " gross

> over-indulgent lifestyle " here in the USA, that leads to high

cholesterol.

> He apparently missed the oddity I was trying to point out, and also

didn't

> notice (or care) that I am not the least overweight.

>

> Please excuse my tone, it's just that I have been REALLY stressed

out over a

> series of " perfect storm " misfortunes (the above just touches on a

couple,

> there's more). In the meantime I am taking a couple of OTC

supplements that

> I pay for myself, ordered online at the best price I can find. When

I get

> this " consultation " (in the next century?) I'll compare the advice

with my

> own knowledge and decide for myself what I am going to do. This is

not an

> attitude I've come to easily, or assume happily.

>

> Again, everyone please excuse this too-long rant. I'll try not to

whine

> again (soon anyway). :-)

>

> Regards

> Steve D.

>

> Date: Thu, 14 Oct 2004 21:47:32 -0000

> From: " ohgminion "

> Subject: Re: mito cocktail, Dr. Schoffner's list of about 15 ???

>

> [...]

> 2) The dr. I saw was Shoffner in Atlanta, FYI. I wouldn't

feel

> comfortable posting the list (and it would take some time), but I

> know many people (including myself) have noted here that they are

> taking various suppplements, on and off the list, with various

> results. Perhaps your doctor can get a mito doctor to do a

> consultation, and take their recommendations for treatment?

>

> Take care,

> RH

>

> > [...] Nonetheless, can anybody point me to this particular list?

> >

> > Peace,

> > Steve D.

> > [54-year-old male, late-onset mito]

> >

> > > Date: Mon, 11 Oct 2004 19:26:28 -0000

> > > From: " ohgminion "

> > > Subject: Re: 2nd muscle bx: to be read at Columbia-Presbyterian,

> NYC

> > >

> > > [...]

> > > I was told that whether or not I have MELAS exactly, I would be

> > > treated the same way, based on my symptoms and what the lab

tests

> > > showed. The basic thought is:

> > > 1) Check out systems with problems (for me, eyes, muscles,

> > > digestive).

> > > 2) Get a baseline for systems without problems yet (for me,

> heart,

> > > ears)

> > > 3) Treat by going down the list of the " mito cocktail " . Starts

> with

> > > CoQ10, and there are about 15 on Dr. Shoffner's list.

> > > [...]

> > >

> > > Take care,

> > > RH