What My Neurologist Said, and What My Family Didn't Say

[Guest guest]

Dear Listmates,

On June 16, I saw my wonderful lady neuro in NYC. During the visit, I

asked her if it were possible for her to give me a prognosis. As some of

you may remember, I ended up in our local Pennsylvania hospital last

June with a migraine, unstoppable vomiting, and then extreme

tachycardia.

She told me that if, in last year, my endocrinologist, GI

doc,cardiologist, and she had not worked together as a team, (and it was

she who put it together; however, I've had my endo in NYC now for almost

30 years) that I would not still be here--that I would not have survived

the year. She says it is these mito " episodes " are what kill. I think

most of us would agree with her.

Last week was a really terrible one for me. I have not been out of the

house for a week, and have lost 10 pounds. Severe back problems,

headache, vomiting, etc.

My liver tests are off, and now the kidney ones. And they can't get the

magnesium up.

I had planned to go to Pittsburgh in August, but if it were this week, I

know I could not make the drive. My husband can't drive because of his

severe eyesight problems. (He had 20/20 early last year.)

This neuro is a close professional friend of the pathologist at Columbia

who is in charge of the mito biopsys, and who read mine there in 1999.

My neuro asked me in April if I would consider another biopsy, since my

problems have escalated so much since then. She has contacted the

Columbia pathologist, and they went over all of my records again. So, I

have agreed to have another bx done in September, especially because I

have children, and now two new grandchildren. To my great chagrin,

neither one of my daughters would tell her OB of my mito. In fact, I was

standing next to the bassinet of little Claire when a nurse came in with

some paperwork, and asked my daughter if there was any hereditary

hearing loss in the family, and said, " No. " There I was, wearing

probably wearing the most powerful hearig aids made, and have been told

by more than one specialist that I will lose all of my hearing. I was so

upset and flabbergasted, and so was my neuro when

I told her. My husband agrees with my daughters---why even worry about

all of this now?

I am so very grateful that I can tell you all about this. It is as if

they are ashamed of me, or that all of this is my fault. No one in the

family will read anything about mito. Right now, I feel broken-hearted,

very much alone...

But I know how lucky I am compared to those of you with your mito

angels---mothers like . There are so many of you, I know, and I send

you my prayers.

Profound thanks for letting me vent....

I apologize to those I owe posts or private

letters, but I know you understand---Lynne from the UK, , and

others..

I warmly welcome all of our new members. You have found some of the most

wonderful people in the world here..

God Bless you all.

Love,

[Guest guest]

Hi , I know what the isolation is that one feels when family members

ignore the obvious, even when they themselves experience symptoms. It does

feel like we are inferior. Hang in there. You have a wonderful family that

understands right here in mitodies. I don't know what I would do without

them. Hope you start feeling better! Cheers, Ruth

[Guest guest]

I am glad you came to us when the family isn't listening. I think that some

people find it easier to ignore something, rather than face it head on.

There is no right way or wrong way of handling these things, but it sure

would be nice if our families were on the same page as us.

Please keep us posted on your progress. I hope you get to the conference and

that we can talk with each other.

laurie

> From: BDS31@...

> Reply-To:

> Date: Sun, 27 Jun 2004 21:06:35 -0400

> To: adultmito ,

> Cc: BDS31@...

> Subject: What My Neurologist Said, and What My Family Didn't Say

>

> Dear Listmates,

> On June 16, I saw my wonderful lady neuro in NYC. During the visit, I

> asked her if it were possible for her to give me a prognosis. As some of

> you may remember, I ended up in our local Pennsylvania hospital last

> June with a migraine, unstoppable vomiting, and then extreme

> tachycardia.

> She told me that if, in last year, my endocrinologist, GI

> doc,cardiologist, and she had not worked together as a team, (and it was

> she who put it together; however, I've had my endo in NYC now for almost

> 30 years) that I would not still be here--that I would not have survived

> the year. She says it is these mito " episodes " are what kill. I think

> most of us would agree with her.

>

> Last week was a really terrible one for me. I have not been out of the

> house for a week, and have lost 10 pounds. Severe back problems,

> headache, vomiting, etc.

> My liver tests are off, and now the kidney ones. And they can't get the

> magnesium up.

>

> I had planned to go to Pittsburgh in August, but if it were this week, I

> know I could not make the drive. My husband can't drive because of his

> severe eyesight problems. (He had 20/20 early last year.)

>

> This neuro is a close professional friend of the pathologist at Columbia

> who is in charge of the mito biopsys, and who read mine there in 1999.

> My neuro asked me in April if I would consider another biopsy, since my

> problems have escalated so much since then. She has contacted the

> Columbia pathologist, and they went over all of my records again. So, I

> have agreed to have another bx done in September, especially because I

> have children, and now two new grandchildren. To my great chagrin,

> neither one of my daughters would tell her OB of my mito. In fact, I was

> standing next to the bassinet of little Claire when a nurse came in with

> some paperwork, and asked my daughter if there was any hereditary

> hearing loss in the family, and said, " No. " There I was, wearing

> probably wearing the most powerful hearig aids made, and have been told

> by more than one specialist that I will lose all of my hearing. I was so

> upset and flabbergasted, and so was my neuro when

> I told her. My husband agrees with my daughters---why even worry about

> all of this now?

> I am so very grateful that I can tell you all about this. It is as if

> they are ashamed of me, or that all of this is my fault. No one in the

> family will read anything about mito. Right now, I feel broken-hearted,

> very much alone...

>

> But I know how lucky I am compared to those of you with your mito

> angels---mothers like . There are so many of you, I know, and I send

> you my prayers.

> Profound thanks for letting me vent....

> I apologize to those I owe posts or private

> letters, but I know you understand---Lynne from the UK, , and

> others..

>

> I warmly welcome all of our new members. You have found some of the most

> wonderful people in the world here..

> God Bless you all.

> Love,

>

>

>

>

> 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]

,

I am so sorry to read that your health has taken a decline. This in itself is

very hard to handle. I know you were anticipating the trip to Pittsburgh in

August for the conference and I do hope you can make it but I also know you have

to feel better to be able to do that. Traveling is one of the hardest things

for me to manage.

Boy do I understand denial. I have seen it in multiple family members and these

family members have very strong symptoms. It seems to be easier to say this is

a fluke than that it's real. The most positive thing I can say is that

hopefully, you don't have a materally inherited form of the disease and neither

your daughters or your grandchildren will ever have to know what it is like.

I wish I could be there right now to put my arm around you. You are such a

strength for all of us and have been for such a long time. Please get well.

Hugs!

Alice