Re: returning

June 9, 2006

Hi Christie,

I'm Ellie, I too have been off list for a long time. Just checking in to see

how everyone is.

I see Figgy is still around. Any other N. CA persons?

Hugs,

Elle

christie5313 christie5313@...> wrote:

I'm Christie and I've been gone a while. If anyone remembers please

send a note.

Life should NOT be a journey to the grave with the intention of arriving

safely in an attractive and well preserved body, but rather to skid in sideways,

chocolate in one hand, wine in the other, body thoroughly used up, totally worn

out and screaming WOO HOOEY! WHAT A RIDE! (author unkown)

June 10, 2006

Welcome back Ellie,

I am from northern CA too! I live in Santa . Where are you?

Joanne

_____

From: [mailto: ] On Behalf

Of Elleen

Sent: Friday, June 09, 2006 9:38 PM

To:

Subject: Re: returning

Hi Christie,

I'm Ellie, I too have been off list for a long time. Just checking in to see

how everyone is.

I see Figgy is still around. Any other N. CA persons?

Hugs,

Elle

christie5313 yahoo.com>

wrote:

I'm Christie and I've been gone a while. If anyone remembers please

send a note.

Life should NOT be a journey to the grave with the intention of arriving

safely in an attractive and well preserved body, but rather to skid in

sideways, chocolate in one hand, wine in the other, body thoroughly used up,

totally worn out and screaming WOO HOOEY! WHAT A RIDE! (author unkown)

June 10, 2006

Hi, Elle-

I¹m fairly new and don¹t post much-

I live in .

Kathleen

June 10, 2006

Hi, Joanne-

Who¹s your doctor?

Kathleen from

June 10, 2006

Hi to all No. CA Mitos,

I'm a (MELAS). I live between sonora and Angels Camp in Copperopolis.

My caregivers are at the Palo Alto Medical Clinic. I have not found the

quality of care I receive there any closer to home. Recently developed macular

edema and am now on insulin 4 times daily. A steady slid down hill.

a

June 10, 2006

Hi,

I am in a small farming town outside of Chico. :-)

I was the coordinator for the NCA group until I took my leave of absence. If

anyone is interested in restarting a N. CA chapter or if there is an existing on

please let me know.

Thanks,

Elle

Kathleen Robins kdrobins@...> wrote:

Hi, Elle-

I¹m fairly new and don¹t post much-

I live in .

Kathleen

June 10, 2006

I don't really have a doctor Kathleen. I keep trying, but no one will take

me on. My PCP and my cardiologist are my only regulars. I have been trying

to find a neurologist, but no luck. The last one I went to was at least

honest about it. He told me to my face that he didn't know anything about

Mito, wasn't willing to learn and would not help me find someone who would

help me. Oh well. I went to see Dr. Enns at Stanford once a couple of

years ago. He said I might have mito, but since there was no cure, he

didn't see the point in looking any further. His assistant told mly PCP

that she thought I had a conversion reaction. This is even though they had

the autopsy results from my grandaughter. Her muscle biopsy showed

mitochondrial proliferation. I am having a real problem getting anyone to

listen. I have just about given up on the medical profession. I just

handle my symptoms as best I can.

Do you have a doctor that is treating you. Is he/she knowledgeable about

mito?

Joanne

_____

From: [mailto: ] On Behalf

Of Kathleen Robins

Sent: Friday, June 09, 2006 11:25 PM

To:

Subject: Re: returning

Hi, Joanne-

Who¹s your doctor?

Kathleen from

June 10, 2006

Hi, Joanne-

I¹m hoping to get in to see Dr. Enns; currently I¹m involved in UC Irvine¹s

Center for Mitochondrial Medicine¹s research program, and Dr. Enns¹ office

wants to wait to see me until after all Mitomed¹s diagnostic testing is

complete. Mitomed provides no clinical care but will hopefully help to

refine my diagnosis. In Sacramento, I see Dr. Hahn at the MDA clinic at

UCDMC. He¹s a physiatrist who is willing to learn about mito. He had

clearly spent some time doing so before our first appointment, and came

armed with all kinds of printouts and reports from the big mito medicine

centers. He is the first person who has been willing to order baseline

metabolic, pulmonary, cardiology and audiology testing for me, along with

getting me into physical therapy with a PT who is at least familiar with MD.

I¹m very hopeful about my local care team because of him. My GP is also

great, but she¹s way over her head here. She will fight the system/ help me

to fight the system though, and that¹s huge.

There are still gaps for me, though- I¹m not on the mito cocktail because

no one locally is willing to supervise/ help me refine it. UC has had

a hard time even doing the labs to ascertain carnitine and CoQ10 levels, and

has screwed up multiple lactose draws. I take antioxidants and eat

agressively well, but that¹s about it for supplementation right now.

The neurologist I saw before meeting my MDA doc (also at UCDMC) was

terrible- arrogant, not knowledgeable and unwilling to admit what he didn¹t

know. Up until I saw Dr. Hahn for the first time in April, every

specialist I¹d seen, every test that had been performed came about because

of my research and dogging. I am by far the most knowledgeable about mito

(issues, therapies and symptoms) of all the doctors I¹ve seen in Northern

CA. I¹ve more or less supervised my own care, which has been both

overwhelming and terrifying at times.

The folks at Irvine are great, and have been extremely supportive. Dr. Enns¹

office has been supportive too, but I think I may be ³lucky² in that I have

a fairly clear-cut case: my first biopsy (done poorly by UC at my

demand last November) showed clear mitochondrial proliferation, though no

Southern Blot was done. I was diagnosed with CPEO twelve years ago and

those two things together seem to make my case of mitochondrial disease easy

to accept/believe, and appears ³easier² to deal with for other doctors. I

know Mitomed was very eager for me to participate in their studies.

I flew down to Irvine at the end of last month for a clinical consult with

Dr. Comacho of UCI¹s Mitomed team and to have a second biopsy done by Dr.

Bose, a neuro-ophthalmologist at UC Irvine MC who works closely with

Mitomed. Both doctors were wonderful, and I have to say that it was the

first time in the course of this disease I felt like the people treating me

knew more than I did, and had both experiential knowledge as well

book-learned knowledge. It was a huge relief not to feel like I was

completely in charge of it all. I have real regret that we don¹t live closer

to that kind of medical care.

Do you have access to an MDA clinic? From what I can tell, it seems like the

docs there are making an effort to understand and support mito issues and

patients, although the Sacramento MDA office itself is oriented pretty

exclusively to MD, and doesn¹t seem capable at this time of supporting those

of us with more subtle/ still more complicated issues. They are also hugely

focused on fundraising, which is not a place I¹m quite at yet. I¹m still

trying to come to terms with what is happening to me and what it will mean

to me and my family, particularly my two young children and husband. I

could really use some support in figuring out how to explain mito to my kids

without scaring them to death (as I sometimes am). Since the medical stuff

seems to be more or less on track now, that¹s what I¹m focusing my research/

investigations on now.

Sending you good thoughts,

Kathleen

June 10, 2006

Hi, a-

I don¹t know if you ever got my message about Dr. Jay Han at the MDA clinic

at UC Medical Center. He¹s not a mito specialist, but he¹s very

interested and willing to learn. I¹ve been very impressed by his efforts on

my behalf so far, and believe he will be a very good member of my ³local

care team.² I¹m hoping to get in to see Dr. Enns in the next several months,

and though my drive won¹t be as far as yours, it¹s still going to be a hike.

Take care,

Kathleen

June 10, 2006

Kathleen,

I did receive your message regarding Dr. Hahn at UCDMC. I attended an MDA

orientation in Sacramento. When I applied for a referral to UCDMC MDA Clinic

my insurance company refused me. They have also refused to pay for any of my

supplements or a compound of the mito cocktail. I have followed both

requests to the state level so have hit the dead end. Meanwhile I drive to

Palo

Alto for care. My caregivers do communicate with each other. My

ophthalmalogist recently spoke with my endocrinologist, much to my surprise.

Dr. Enns is more research oriented than involved with clinical treatment but

he is willing to do any telephone consults my caregivers need. Meanwhile, I

stay in Palo Alto for two or three days at a time trying to get in as many

appointments at a time that I can.

Maybe the N. CA mitos should make a group appointment with Dr. Hahn and

convince him that there are enough of us to really provide a mito focus.

a

June 12, 2006

a,

I would be interested in chatting with you more on the N CA doc mobbing :-)

Please email me off list emelliebear@...

Thanks!

Elle

Dx 2000 by Dr Cohen and Dr Boles with MIDS

pattengale@... wrote:

Kathleen,

I did receive your message regarding Dr. Hahn at UCDMC. I attended an MDA

orientation in Sacramento. When I applied for a referral to UCDMC MDA Clinic

my insurance company refused me. They have also refused to pay for any of my

supplements or a compound of the mito cocktail. I have followed both

requests to the state level so have hit the dead end. Meanwhile I drive to Palo

Alto for care. My caregivers do communicate with each other. My

ophthalmalogist recently spoke with my endocrinologist, much to my surprise.

Dr. Enns is more research oriented than involved with clinical treatment but

he is willing to do any telephone consults my caregivers need. Meanwhile, I

stay in Palo Alto for two or three days at a time trying to get in as many

appointments at a time that I can.

Maybe the N. CA mitos should make a group appointment with Dr. Hahn and

convince him that there are enough of us to really provide a mito focus.

a

June 12, 2006

Hi Kathleen,

It was so good to hear from you. I am so glad you are finally getting some

answers. And some knowledgeable help. I have never had any baseline draws.

I started myself on the mito cocktail. I know that is not advisable, but I

felt I had no option. Like you I have been and still are my own doctor. It

is terrifying to realize that I know more about mito than the drs who are

treating me. Let me know what you find out with your PT. I have a friend

who is a physical therapist and she has offered to help me, but I don't know

what to tell her to do. You are lucky with your GP. My doctor is willing

to listen to me, but will not go to bat for me. He waits until I come in

and suggest a test or a doctor. Then he will give the referral. I am

pretty much on my own with my insurance co. though. I asked my PCP 2 years

ago for an insurance case manager. He said that was fine go ahead and do

it. I tried, but it has to come from a dr. I explained that to him and he

still hasn't done anything about it. Sigh....

I went to the MDA clinic in San Francisco. They were very warm and

supportive, but they knew nothing about Mito. They really specialize in

ALS. They gave me some helpful suggestions however. I had a sleep study

after talking to them. and that has helped a lot. I have severe Sleep

Apnea, both obstructive and central. I stopped breathing between 80-90 times

an hour. Needless to say my sleep was not restorative. The doctor I saw,

Dr Madison, was sure I had epilepsy. But every eeg has come back normal.

I certainly have a movement disorder, but I don't think it is epilepsy. I

may end up going back to her, as she was at least willing to listen.

I understand how hard it is to explain things to your children. Mine were

quite young when I became sick. I think was 9 and was 6. I

tried to protect them as much as possible. I just told them that I was sick

and had to rest a lot. Of course at the time I had no clue what was going

on. I must have succeeded to some extent, because my son, who is now 22,

has now just realized how sick I am. He moved back in with us 18 months

ago. And as an adult now sees what is going on. My husband has been

supportive. Even though he frustrates me that he lets me handle all the

dr's and research and such. I sometimes wish he would take a more active

part and speak for me when I can't. I count my blessings every day though

that he has stayed by my side.

Joanne

_____

From: [mailto: ] On Behalf

Of Kathleen Robins

Sent: Saturday, June 10, 2006 12:04 PM