Re: Re: Q10 and Carnitine blood tests

[Guest guest]

Maggie

I think it is probably the lab you are dealing with. I always go to

our local hospital for blood work. They are willing to go the extra

mile. They have the actual lab people who can make sense out of the

request, as the satlette labs are really drawing stations and the

people are only pholbotamists (sp?).

I hope you can find a lab that provide you with your tests without all

the hasstle.

laurie

> I'm not sure what's written in the MDA booklet, but I know how

> difficult it was for me to get the local lab to co-operate to order

> my CoQ10 test. What a project for something that just shouldn't

> have been that difficult. (I had been told by my metabolic doc's

> office that I could have the blood drawn locally and the local lab

> just needed to call the actual testing lab for instructions.)

>

> My local doc offered to have her office draw the blood and send it

> to the metabolic clinic (the nurse later refused and told me the DOC

> isn't the one who actually draws the blood and she didn't care what

> I was promised, I needed to go to someplace like Quest Labs). I did

> just that and unfortunately I was recognized by one of the employees

> as I had been there before with unsual lab requests. She

> immediately told me that they were too busy to be doing anything out

> of the ordinary (they had three people in the waiting room).

>

> I kindly insisted they COULD do this and I wasn't in a hurry. I'd go

> away and come back when they had the time to make the phone call.

> The next day I got a call that they had figured it out. They

> actually sent the blood to a different lab than what I told them (no

> idea how that could have happened and why they didn't just call the

> phone number I GAVE them) but it leaves me wondering how other

> people manage. I assume it's a lot easier when you have everything

> done through an MDA clinic. Or when you're AT the actual facility

> where they run the tests.

>

> Maggie

>

>

>

> > > Thanks for the replies. I was at my blood lab yesterday for

> > another

> > > test, and asked about getting tested there. The guy had no idea

> > what I

> > > was talking about. Fortunately, or maybe unfortunately, I'm

> > getting

> > > kind of used to that sort of response.

> > >

> > > I made an appointment at my local MDA clinic. They should know

> > what to

> > > do.

> > >

> > > There is info at Epic about Q10 blood levels.

> > >

> > > B

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

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>

>

[Guest guest]

Thanks so much, as I said I think I am going one step forward and I end up going

two steps back, I'm beginning to feel like I'm fighting a neverending battle.

One answer I got from my PCP was " what makes the difference about a good

diagnosis as there isn't any cure anyway " so I just try to find out what I can

on my own, Dr. Baker can only go so far as he is a semi-retired orthodaedic

doctor, but if is hadn't been for him I would never have been granted my first

short-term disability. I had been dragging my right for several months and was

barely able to walk but the info my previous neurologist sent in with the

company's short-term disability request stated that " I had a gait problem " ,

whereas my PCP stated that I has osteoarthritis of the left knee " ? Finally I

called Dr. Baker for help and by the time he finished calling/writing I was

approved for short-term disability not once but twice. The second time all he

had to do was send in a copy of his first letter, new office notes

and copies of recent x-ray reports. He never once would say I had Parkinsons as

he didn't believe it and fought the diagnosis from day one,all he would say was

that I had a " Parkinson like condition " , severe peripheral neuropathy in both

legs, degenerative scoliosis of the spine etc. I also didn't realize that

instead of moving my eyes from side to side I was actually moving my head so

when Dr. Baker noticed that he called my opthamologist about seeing me and his

nurse called me the next day about an appt. Thanks, Laurie I will get an e-mail

off to Kara and see what info I can get from her, like I ,said in an earlier

e-mail I did hear from MDA but of course their only clinic is at KU and getting

there is sort of like me trying the swim the Missouri river. Dolores

Laurie Fitzgerald laurie.fitzgerald@...> wrote:

Delores

I e-mail Kara directly as she is the communications person. Her e-addy is:

kara@...

laurie

> I was wondering if you have a different website/phone number, e-mail/address

> than the ones on the card Dr. Baker gave me to carry in my purse,

> www.umdf.org - info@... 8085 Saltsburg Road, Suite 201

> Pittsburg, PA 15239 as I would be interested in ordering any informative

> booklets as I am sort of drowning (so to speak) since all I really am able

> to do is find out what I can via the internet. My neorosurgeon told my

> Grandson that he never did feel that my seizures were due to my brain tumors

> and from the information in my records, from Dr. Baker's original findings

> late last year and results of the massive number of blood tests that my

> current neurologist keeps ordering that everything points to a Mitochondrial

> Myopathy. When this info and type of tests that need be done gets to my PCP

> she shoots everything down, the last time she asked me " which Mitochondrial

> are we talking about as there are a lot of them " , when I tell her she needs

> to check with the other doctors

> she says she will and I hear nothing. I last saw her on April 21st and

> tests were to be ordered, I called her office yesterday and made inquiries

> about the tests, her nurse said they would get back to me before 5:00 and as

> usual I heard nothing. I feel I am sort of between the " devil and the deep

> blue sea " as my Daddy would say when nothing was going the way it was

> supposed to. Thanks for listening and if you have other address, etc please

> share them with me. Dolores

>

>

> Steve micro_choice@...> wrote:

> I've just re-examined the MDA booklet on mito. BTW even though the MDA site

> has online ordering of their various booklets, they ask that you limit

> yourselves to one of each. I called their publications phone munber about

> this, explained that I hand these out now and then, and the nice lady

> immediately sent me a free supply of about 30.

>

> Under " treatment " , the MDA mito booklet first talks generally of some

> symptoms like stroke, seizures, etc. and says there are " highly effective

> treatments (including medications, dietary modifications, and lifestyle

> changes) " but then adds VERY little detail. They do cite creatine,

> carnitine, and coQ10, but ony as supplements. Later on, they mention DCA

> for

> lactic acidosis.

>

> Under " diagnosis " , the MDA mito booklet starts with physical examination.

> In

> their la-la world, a physician would then supposedly note multiple symptoms

> that " strongly point " to mito, order tests of stength and endurance, put

> two and two together and next order a muscle biopsy (looking for RRF)!!!

> Other choices at this point would be MRS tuned for phosphocreatine and ATP,

> and CT and MRI to visualize muscle structure. There is of course no mention

> of the likely coertion that will be needed before doctors actually order

> these expensive tests. Then finally the booklet cites blood tests, but they

> only list lactate/pyruvate (with no mention of incorporating exercise) and

> CK. Finally they cite genetic tests looking for mutations in blood and

> muscle.

>

> That's it. It's perhaps unfair to characterize this introductory booklet as

> lame. But I certainly wouldn't consider it any kind of resource or guidance

> for doctors ordering tests.

>

> Steve D.

>

> P.S. I know that many children get mito, but I sure wish there was a

> version

> of this booklet that didn't HEAVILY picture kids. An adult version would

> GREATLY improve my credibility when I hand out this booklet.

>

> > Date: Fri, 20 May 2005 04:26:49 -0000

> >

> > Subject: Re: Q10 and Carnitine blood tests

> >

> > I'm not sure what's written in the MDA booklet, but I know how

> > difficult it was for me to get the local lab to co-operate to order

> > my CoQ10 test. What a project for something that just shouldn't

> > have been that difficult. (I had been told by my metabolic doc's

> > office that I could have the blood drawn locally and the local lab

> > just needed to call the actual testing lab for instructions.)

> >

> > My local doc offered to have her office draw the blood and send it

> > to the metabolic clinic (the nurse later refused and told me the DOC

> > isn't the one who actually draws the blood and she didn't care what

> > I was promised, I needed to go to someplace like Quest Labs). I did

> > just that and unfortunately I was recognized by one of the employees

> > as I had been there before with unsual lab requests. She

> > immediately told me that they were too busy to be doing anything out

> > of the ordinary (they had three people in the waiting room).

> >

> > I kindly insisted they COULD do this and I wasn't in a hurry. I'd go

> > away and come back when they had the time to make the phone call.

> > The next day I got a call that they had figured it out. They

> > actually sent the blood to a different lab than what I told them (no

> > idea how that could have happened and why they didn't just call the

> > phone number I GAVE them) but it leaves me wondering how other

> > people manage. I assume it's a lot easier when you have everything

> > done through an MDA clinic. Or when you're AT the actual facility

> > where they run the tests.

> >

> > Maggie

> >

> >

> >

> > > > Thanks for the replies. I was at my blood lab yesterday for

> > > another

> > > > test, and asked about getting tested there. The guy had no idea

> > > what I

> > > > was talking about. Fortunately, or maybe unfortunately, I'm

> > > getting

> > > > kind of used to that sort of response.

> > > >

> > > > I made an appointment at my local MDA clinic. They should know

> > > what to

> > > > do.

> > > >

> > > > There is info at Epic about Q10 blood levels.

> > > >

> > > > B

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

> ---------------------------------

>