Re: Biopsy Results/Dx?--Long!

[Guest guest]

Shayna, I have to say that the way you have come to terms with uncertainty

is very impressive. I'm in awe, truly. You are a model for all of us, and a

personal encouragement to me, given that there is still much not understood

about my co-disorders, even though I have confirmed diagnoses. Clearly your

strength has been hard-earned and in that case will not desert you, whatever

happens. I won't forget you and will carry your example around with me on

gray days, even as I draw strength from all the others who come and go in

this group.

Blessings!

Barbara

> Biopsy Results/Dx?--Long!

>

> Hello All,

> I got my biopsy results yesterday along with a 1 1/2 hour discussion

> about what it all means.

>

> The biopsy was normal. For complex I and III my scores were the lowest

> possible for the normal range. The lab is running those tests again on

> a saved piece of tissue but the 2nd results are likely to be

> the same.

>

> If I want to, I can get a fresh biopsy and/or a pulmonary level 3 test

> (not sure I got that name right) which could provide more info and a

> more conclusive dx. But, with more conclusive evidence, the treatments

> my doc would offer would only be a bit different from what she's

> offering now so at the moment I feel uninclined to get more testing.

>

> We talked at length about whether she thought I had mito or not. She

> was absolutely lovely--very honest and real regarding her own

> conflicts about how to think about situations like mine. On the one

> hand, she doesn't want people to go around believing they have this

> illness if they might not (since it has serious implications). On the

> other hand, she doesn't want people not to get the medical help they

> might need if there's a chance they do have it. She talked about how

> little they really know. And she knows *a lot* as mito doctors go,

> giving me substantive scientific info wherever applicable and tales of

> what her cadre of mito-doc peers debate amongst themselves.

>

> I think there's a lot of flexibility here for me to view this as I

> want to. Both she and I think it's prudent for me to be on the mito

> cocktail and I left with a full list of vitamins, cofactors, and

> suggested doses. She also gave me written instructions about avoiding

> metabolic stress and a protocol for emergency situations if I want to

> use it. She said some ER docs get pissed when you have opinions about

> your own care while others are receptive.

>

> But do I have mito? I'm already on Medicaid, Medicare, and SSDI with

> the diagnosis I have so I don't need a dx for that purpose. And, she

> said Medicaid in Massachusetts isn't receptive to clinical diagnoses

> of mito anyway. I asked if it would be honest to tell Epic that I had

> mito if I wanted to buy CoQ10 from them and get a discount. She

> said they would probably understand and support the " clinical dx "

> phrase. Will I tell myself I have mito? I'm not sure yet, but I doubt

> it. Currently, I am telling myself that it's possible I have mito so I

> should take reasonable precautions. Also, if new developments arise, I

> can choose to see her again or take more tests at any time. But for

> now, I actually think uncertainty might be the best option.

>

> I know this is a long letter; I hope you don't mind. I'm working out

> my feelings here I guess. I want to explain why I think uncertainty,

> with all its difficulties, might work for me.

>

> First of all, it feels honest in my case. Second, I'm used to it. I

> had symptoms since I was eight, was in a wheelchair by the age of 16,

> and didn't get my first dx until I was 19. Even then there were

> some questions about it. Imagine that! A teenager in a wheelchair who

> didn't even know why. The shame was so intense. In my twenties, the

> doctors accepted the RSD dx more though it never accounted for all my

> symptoms. I learned to live with the fact that doctors don't know

> everything and that I have something that's not understood. I learned

> to sort out doctors who couldn't deal with uncertainty (and who would

> therefore say it's all in my head) from doctors who could support me

> through the uncertainty. I got over the shame. I found friends who

> supported me no matter what.

>

> In my thirties my symptoms changed dramatically. The RSD lessened but

> the muscular issues got much more intense and I was suddenly bedridden

> for 3 years. No one knew why. It was scary not to have an explanation

> and not to have any way of guessing what was coming down the pike but

> I learned to open up to life's utter unpredicability. Now, my neuro

> pain and muscular problems are much less acute but I'm still

> significantly disabled. I think I would prefer at this point to allow

> myself to be a medical question mark. I know what some of the

> possibilities are; knowing more about mito is empowering; I can take

> appropriate precautions and if something comes up that seems like a

> mito-related problem, I know who to go to. But I'm not convinced that

> I have it. All I know is that my symptoms are what they are (to sort

> of mangle a phrase from RH). It's tough to not know what causes them

> or what the future holds, but even if I had a definite dx of mito, I

> still wouldn't know what the future holds. I feel able to live with

> the uncertainty and grateful for the loving friends in my life and the

> supportive physicians who open to the unknowns with me.

>

> I wonder how much I will stay involved with this group. You have

> helped me so much. You know how grateful I am to you. And there is

> still a suspicion of mito for me so perhaps lurking around here will

> help. I'm still " digesting " all of this, if you can pardon the metaphor.

>

> Anyway, that's the scoop. Thanks for " listening. "

>

> Hugs all around,

> Shayna

>

>

>

>

>

> 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.

>

>

[Guest guest]

Shayna

What OTC's have you or others had success with? Also, any thought about help

from MDA, or would that not work for you due to insufficient diagnosis? Finally,

if you've been assigned (or signed up for) a Part D insurer, you should be in

the most-subsidized " Medicaid-transfer " tier, i.e. $0 per month and $0 (or maybe

$1 or $2) for co-pays. Of course, that's only for scrips, but then people here

have talked of orphan-drug OTCs, so maybe D insurers can be swayed.

Are you using legal services pre-emptively, or is this after a refusal?

I live in MA also.

Steve D.

Re: Biopsy Results/Dx?--Long!

Hi there, Mitoldies,

As those of you have been reading the posts have seen, I've continued

to lurk around this group despite my inconclusive or clinical

diagnosis. Thanks so much, Laurie, for saying you would always

consider me part of this family.

As an update, I'll just say that I continue to feel uncertain about

whether I have mito or not and sometimes I *would* like to know for

sure. But oh well, knowing still doesn't feel essential. The biggest

difficulty has been realizing how expensive this darn cocktail could

wind up being. I mean, I live on a low, fixed income! I'm going

through the legal services office here to try to develop a strategy

for approaching Medicare and/or Medicaid; in Massachusetts, they have

sometimes covered it and sometimes not.

Anyway, thanks to all of you for being there.

Best,

Shayna

[Guest guest]

Hi Steve,

MDA never occurred to me. I don't know if they would consider my

diagnosis sufficient or not but it's worth a try.

Yes, I'm on the best tier of Part D but there are some drugs that

MassHealth still covers for dual beneficiaries. At the moment, no one

is sure which category, or insurance program, the mito stuff falls

into. I am using legal services in part to figure this out.

Also, Medicare has given me a denial already. That is routine for

vitamins and cofactors. They always give a denial first and make you

go through an appeals process with these kinds of things. Since

Medicare is new at offering scripts, my past experience was with

MassHealth. Once, they suddenly stopped paying for a prescription med

that I'd been on for years. (Ouch!) Without a lawyer, I couldn't even

get them to respond to my faxes, letters and phone calls. I don't know

if Medicare will be the same, but that experience has influenced my

approach now. I called back the same lawyer who helped me last time.

Thanks for your suggestions. I'll let you know what happens.

Best,

Shayna

>

> Shayna

>

> What OTC's have you or others had success with? Also, any thought

about help from MDA, or would that not work for you due to

insufficient diagnosis? Finally, if you've been assigned (or signed up

for) a Part D insurer, you should be in the most-subsidized

" Medicaid-transfer " tier, i.e. $0 per month and $0 (or maybe $1 or $2)

for co-pays. Of course, that's only for scrips, but then people here

have talked of orphan-drug OTCs, so maybe D insurers can be swayed.

>

> Are you using legal services pre-emptively, or is this after a refusal?

>

> I live in MA also.

>

> Steve D.

> Re: Biopsy Results/Dx?--Long!

>

>

> Hi there, Mitoldies,

> As those of you have been reading the posts have seen, I've continued

> to lurk around this group despite my inconclusive or clinical

> diagnosis. Thanks so much, Laurie, for saying you would always

> consider me part of this family.

>

> As an update, I'll just say that I continue to feel uncertain about

> whether I have mito or not and sometimes I *would* like to know for

> sure. But oh well, knowing still doesn't feel essential. The biggest

> difficulty has been realizing how expensive this darn cocktail could

> wind up being. I mean, I live on a low, fixed income! I'm going

> through the legal services office here to try to develop a strategy

> for approaching Medicare and/or Medicaid; in Massachusetts, they have

> sometimes covered it and sometimes not.

>

> Anyway, thanks to all of you for being there.

>

> Best,

> Shayna

>

>

>

>

[Guest guest]

Shayna and Steve

In one of my many social security pamphlets there was a section on

orphan drug coverage, if prescribed by a doctor. They hadn't come to a

final decision as of printing but the feeling was that they had to be

covered according to some existing guidelines. You might want to try

searching the social security website - I think it was on there as

well, along with some congressmen's opinions.

laurie

> Hi Steve,

> MDA never occurred to me. I don't know if they would consider my

> diagnosis sufficient or not but it's worth a try.

>

> Yes, I'm on the best tier of Part D but there are some drugs that

> MassHealth still covers for dual beneficiaries. At the moment, no one

> is sure which category, or insurance program, the mito stuff falls

> into. I am using legal services in part to figure this out.

>

> Also, Medicare has given me a denial already. That is routine for

> vitamins and cofactors. They always give a denial first and make you

> go through an appeals process with these kinds of things. Since

> Medicare is new at offering scripts, my past experience was with

> MassHealth. Once, they suddenly stopped paying for a prescription med

> that I'd been on for years. (Ouch!) Without a lawyer, I couldn't even

> get them to respond to my faxes, letters and phone calls. I don't know

> if Medicare will be the same, but that experience has influenced my

> approach now. I called back the same lawyer who helped me last time.

>

> Thanks for your suggestions. I'll let you know what happens.

>

> Best,

> Shayna

>

>

>

>

>

> >

> > Shayna

> >

> > What OTC's have you or others had success with? Also, any thought

> about help from MDA, or would that not work for you due to

> insufficient diagnosis? Finally, if you've been assigned (or signed up

> for) a Part D insurer, you should be in the most-subsidized

> " Medicaid-transfer " tier, i.e. $0 per month and $0 (or maybe $1 or $2)

> for co-pays. Of course, that's only for scrips, but then people here

> have talked of orphan-drug OTCs, so maybe D insurers can be swayed.

> >

> > Are you using legal services pre-emptively, or is this after a refusal?

> >

> > I live in MA also.

> >

> > Steve D.

> > Re: Biopsy Results/Dx?--Long!

> >

> >

> > Hi there, Mitoldies,

> > As those of you have been reading the posts have seen, I've continued

> > to lurk around this group despite my inconclusive or clinical

> > diagnosis. Thanks so much, Laurie, for saying you would always

> > consider me part of this family.

> >

> > As an update, I'll just say that I continue to feel uncertain about

> > whether I have mito or not and sometimes I *would* like to know for

> > sure. But oh well, knowing still doesn't feel essential. The biggest

> > difficulty has been realizing how expensive this darn cocktail could

> > wind up being. I mean, I live on a low, fixed income! I'm going

> > through the legal services office here to try to develop a strategy

> > for approaching Medicare and/or Medicaid; in Massachusetts, they have

> > sometimes covered it and sometimes not.

> >

> > Anyway, thanks to all of you for being there.

> >

> > Best,

> > Shayna

> >

> >

> >

> >

[Guest guest]

Laurie,

I have only heard that CoQ10 had orphan status. And, I have been under

the impression that Epic/Teshlon was the only company that had it for

CoQ10. Is that right? Do you know if other co-factors have that

status? Or, for CoQ10 if Epic/Teshlon is the only company?

Thanks,

Shayna

> > >

> > > Shayna

> > >

> > > What OTC's have you or others had success with? Also, any thought

> > about help from MDA, or would that not work for you due to

> > insufficient diagnosis? Finally, if you've been assigned (or

signed up

> > for) a Part D insurer, you should be in the most-subsidized

> > " Medicaid-transfer " tier, i.e. $0 per month and $0 (or maybe $1

or $2)

> > for co-pays. Of course, that's only for scrips, but then people here

> > have talked of orphan-drug OTCs, so maybe D insurers can be swayed.

> > >

> > > Are you using legal services pre-emptively, or is this after a

refusal?

> > >

> > > I live in MA also.

> > >

> > > Steve D.

> > > Re: Biopsy Results/Dx?--Long!

> > >

> > >

> > > Hi there, Mitoldies,

> > > As those of you have been reading the posts have seen, I've

continued

> > > to lurk around this group despite my inconclusive or clinical

> > > diagnosis. Thanks so much, Laurie, for saying you would always

> > > consider me part of this family.

> > >

> > > As an update, I'll just say that I continue to feel uncertain

about

> > > whether I have mito or not and sometimes I *would* like to

know for

> > > sure. But oh well, knowing still doesn't feel essential. The

biggest

> > > difficulty has been realizing how expensive this darn

cocktail could

> > > wind up being. I mean, I live on a low, fixed income! I'm going

> > > through the legal services office here to try to develop a

strategy

> > > for approaching Medicare and/or Medicaid; in Massachusetts,

they have

> > > sometimes covered it and sometimes not.

> > >

> > > Anyway, thanks to all of you for being there.

> > >

> > > Best,

> > > Shayna

> > >

> > >

> > >

> > >

[Guest guest]

First time to reply, but have been reading these

comments for a couple of weeks. Do not know much

about Mito, but my husband was ds during the

summer...but has had this for over 40 years. I would

like to know what you mean by orphan status. He has

taken himself of the cocktail and has not seen the

neurologist. Thanks for replying...

Cathy

--- shaynapearl happyclam8@...> wrote:

> Laurie,

> I have only heard that CoQ10 had orphan status. And,

> I have been under

> the impression that Epic/Teshlon was the only

> company that had it for

> CoQ10. Is that right? Do you know if other

> co-factors have that

> status? Or, for CoQ10 if Epic/Teshlon is the only

> company?

> Thanks,

> Shayna

>

>

>

> > > >

> > > > Shayna

> > > >

> > > > What OTC's have you or others had success

> with? Also, any thought

> > > about help from MDA, or would that not work for

> you due to

> > > insufficient diagnosis? Finally, if you've been

> assigned (or

> signed up

> > > for) a Part D insurer, you should be in the

> most-subsidized

> > > " Medicaid-transfer " tier, i.e. $0 per month and

> $0 (or maybe $1

> or $2)

> > > for co-pays. Of course, that's only for scrips,

> but then people here

> > > have talked of orphan-drug OTCs, so maybe D

> insurers can be swayed.

> > > >

> > > > Are you using legal services pre-emptively,

> or is this after a

> refusal?

> > > >

> > > > I live in MA also.

> > > >

> > > > Steve D.

> > > > Re: Biopsy

> Results/Dx?--Long!

> > > >

> > > >

> > > > Hi there, Mitoldies,

> > > > As those of you have been reading the posts

> have seen, I've

> continued

> > > > to lurk around this group despite my

> inconclusive or clinical

> > > > diagnosis. Thanks so much, Laurie, for

> saying you would always

> > > > consider me part of this family.

> > > >

> > > > As an update, I'll just say that I continue

> to feel uncertain

> about

> > > > whether I have mito or not and sometimes I

> *would* like to

> know for

> > > > sure. But oh well, knowing still doesn't

> feel essential. The

> biggest

> > > > difficulty has been realizing how expensive

> this darn

> cocktail could

> > > > wind up being. I mean, I live on a low,

> fixed income! I'm going

> > > > through the legal services office here to

> try to develop a

> strategy

> > > > for approaching Medicare and/or Medicaid;

> in Massachusetts,

> they have

> > > > sometimes covered it and sometimes not.

> > > >

> > > > Anyway, thanks to all of you for being

> there.

> > > >

> > > > Best,

> > > > Shayna

> > > >

> > > >

> > > >

> > > > [Non-text portions of this message have been

> removed]

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > 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.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

The Tishon/Epic brand is the one that was granted orphan drug status by the FDA

as they have done the clinical trials (or their product was used in the clinical

trials). That doesn't mean it is the only brand that an insurance company

may/will cover. Our IL medicaid is covering Sulgar brand obtained thru a

pharmacy in Milwaukee.My girls are on large doses of COQ10 but cannot metabolize

the oil used in the product from Epic. For many people that may not be a

problem but for us it is. Epic/Tishon suggested we use the chewable instead

because it is fat free, but my girls hate them. They are difficult to chew and

they didn't like the flavor. It was their choice to take a bigger quantity of

smaller capsules with no added fat. When we actually compared the price, what

we are doing is costing the State less so it is a win win situation.

shaynapearl happyclam8@...> wrote: Laurie,

I have only heard that CoQ10 had orphan status. And, I have been under

the impression that Epic/Teshlon was the only company that had it for

CoQ10. Is that right? Do you know if other co-factors have that

status? Or, for CoQ10 if Epic/Teshlon is the only company?

Thanks,

Shayna

> > >

> > > Shayna

> > >

> > > What OTC's have you or others had success with? Also, any thought

> > about help from MDA, or would that not work for you due to

> > insufficient diagnosis? Finally, if you've been assigned (or

signed up

> > for) a Part D insurer, you should be in the most-subsidized

> > " Medicaid-transfer " tier, i.e. $0 per month and $0 (or maybe $1

or $2)

> > for co-pays. Of course, that's only for scrips, but then people here

> > have talked of orphan-drug OTCs, so maybe D insurers can be swayed.

> > >

> > > Are you using legal services pre-emptively, or is this after a

refusal?

> > >

> > > I live in MA also.

> > >

> > > Steve D.

> > > Re: Biopsy Results/Dx?--Long!

> > >

> > >

> > > Hi there, Mitoldies,

> > > As those of you have been reading the posts have seen, I've

continued

> > > to lurk around this group despite my inconclusive or clinical

> > > diagnosis. Thanks so much, Laurie, for saying you would always

> > > consider me part of this family.

> > >

> > > As an update, I'll just say that I continue to feel uncertain

about

> > > whether I have mito or not and sometimes I *would* like to

know for

> > > sure. But oh well, knowing still doesn't feel essential. The

biggest

> > > difficulty has been realizing how expensive this darn

cocktail could

> > > wind up being. I mean, I live on a low, fixed income! I'm going

> > > through the legal services office here to try to develop a

strategy

> > > for approaching Medicare and/or Medicaid; in Massachusetts,

they have

> > > sometimes covered it and sometimes not.

> > >

> > > Anyway, thanks to all of you for being there.

> > >

> > > Best,

> > > Shayna

> > >

> > >

> > >

> > >

[Guest guest]

Cathy

Tishcon has a product that is called Q-gel. It is a unique form of

CoQ10 that has been granted orphan drug status. An orphan drug is one

that is needed by a realatively small poplulation. This status is the

first step in getting FDA approval for sale as a prescription drug.

Trials are very expensive. The orphan drug status is not for mito, but

would be covered the same in most cases if prescribed by a doctor.

Many of the supplements can be declared as medical expenses on US

Federal Income Tax if prescribed by a doctor - best to have the actual

scrip in hand if challenged or if you use a tax preparer.

laurie

> First time to reply, but have been reading these

> comments for a couple of weeks. Do not know much

> about Mito, but my husband was ds during the

> summer...but has had this for over 40 years. I would

> like to know what you mean by orphan status. He has

> taken himself of the cocktail and has not seen the

> neurologist. Thanks for replying...

>

> Cathy

>

> --- shaynapearl happyclam8@...> wrote:

>

> > Laurie,

> > I have only heard that CoQ10 had orphan status. And,

> > I have been under

> > the impression that Epic/Teshlon was the only

> > company that had it for

> > CoQ10. Is that right? Do you know if other

> > co-factors have that

> > status? Or, for CoQ10 if Epic/Teshlon is the only

> > company?

> > Thanks,

> > Shayna

> >

> >

> >

> > > > >

> > > > > Shayna

> > > > >

> > > > > What OTC's have you or others had success

> > with? Also, any thought

> > > > about help from MDA, or would that not work for

> > you due to

> > > > insufficient diagnosis? Finally, if you've been

> > assigned (or

> > signed up

> > > > for) a Part D insurer, you should be in the

> > most-subsidized

> > > > " Medicaid-transfer " tier, i.e. $0 per month and

> > $0 (or maybe $1

> > or $2)

> > > > for co-pays. Of course, that's only for scrips,

> > but then people here

> > > > have talked of orphan-drug OTCs, so maybe D

> > insurers can be swayed.

> > > > >

> > > > > Are you using legal services pre-emptively,

> > or is this after a

> > refusal?

> > > > >

> > > > > I live in MA also.

> > > > >

> > > > > Steve D.

> > > > > Re: Biopsy

> > Results/Dx?--Long!

> > > > >

> > > > >

> > > > > Hi there, Mitoldies,

> > > > > As those of you have been reading the posts

> > have seen, I've

> > continued

> > > > > to lurk around this group despite my

> > inconclusive or clinical

> > > > > diagnosis. Thanks so much, Laurie, for

> > saying you would always

> > > > > consider me part of this family.

> > > > >

> > > > > As an update, I'll just say that I continue

> > to feel uncertain

> > about

> > > > > whether I have mito or not and sometimes I

> > *would* like to

> > know for

> > > > > sure. But oh well, knowing still doesn't

> > feel essential. The

> > biggest

> > > > > difficulty has been realizing how expensive

> > this darn

> > cocktail could

> > > > > wind up being. I mean, I live on a low,

> > fixed income! I'm going

> > > > > through the legal services office here to

> > try to develop a

> > strategy

> > > > > for approaching Medicare and/or Medicaid;

> > in Massachusetts,

> > they have

> > > > > sometimes covered it and sometimes not.

> > > > >

> > > > > Anyway, thanks to all of you for being

> > there.

> > > > >

> > > > > Best,

> > > > > Shayna

> > > > >

> > > > >

> > > > >

> > > > > [Non-text portions of this message have been

> > removed]

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > 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.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Shayna

You are correct on all counts as far as I know. You can go to the

Tishcon website for some info on it.

laurie

> Laurie,

> I have only heard that CoQ10 had orphan status. And, I have been under

> the impression that Epic/Teshlon was the only company that had it for

> CoQ10. Is that right? Do you know if other co-factors have that

> status? Or, for CoQ10 if Epic/Teshlon is the only company?

> Thanks,

> Shayna

>

>

>

> > > >

> > > > Shayna

> > > >

> > > > What OTC's have you or others had success with? Also, any thought

> > > about help from MDA, or would that not work for you due to

> > > insufficient diagnosis? Finally, if you've been assigned (or

> signed up

> > > for) a Part D insurer, you should be in the most-subsidized

> > > " Medicaid-transfer " tier, i.e. $0 per month and $0 (or maybe $1

> or $2)

> > > for co-pays. Of course, that's only for scrips, but then people here

> > > have talked of orphan-drug OTCs, so maybe D insurers can be swayed.

> > > >

> > > > Are you using legal services pre-emptively, or is this after a

> refusal?

> > > >

> > > > I live in MA also.

> > > >

> > > > Steve D.

> > > > Re: Biopsy Results/Dx?--Long!

> > > >

> > > >

> > > > Hi there, Mitoldies,

> > > > As those of you have been reading the posts have seen, I've

> continued

> > > > to lurk around this group despite my inconclusive or clinical

> > > > diagnosis. Thanks so much, Laurie, for saying you would always

> > > > consider me part of this family.

> > > >

> > > > As an update, I'll just say that I continue to feel uncertain

> about

> > > > whether I have mito or not and sometimes I *would* like to

> know for

> > > > sure. But oh well, knowing still doesn't feel essential. The

> biggest

> > > > difficulty has been realizing how expensive this darn

> cocktail could

> > > > wind up being. I mean, I live on a low, fixed income! I'm going

> > > > through the legal services office here to try to develop a

> strategy

> > > > for approaching Medicare and/or Medicaid; in Massachusetts,

> they have

> > > > sometimes covered it and sometimes not.

> > > >

> > > > Anyway, thanks to all of you for being there.

> > > >

> > > > Best,

> > > > Shayna

> > > >

> > > >

> > > >

> > > >