Re: New Kid on the Block

[Guest guest]

ROB,

First of all, welcome to the group. It's sad that you need us, but

good that you found us. I'm new to the group myself (about two

months), and have learned a great deal just by reading the postings.

In response to the question about blackouts, I did have a grand mal

siezure during one of my trips to the hospital, while I was still in

ER. The doctor wasn't sure what caused it, but he thought possibly

it was the medications that they had given me (the ER dr, that is).

My specialist wasn't too taken with that idea, however. The only

other time this happened was at home, and I have no idea what caused

it. I was making the bed, and the next thing I knew my husband was

picking me up off the floor. I wasn't having an attack, althoug one

did hit about five days later.

Anyway, just wanted to say hello. I'm gald you found us, and

welcome!

Anne

[Guest guest]

Welcome Neighbor...well sort of ! I'm SE of Seattle and have been to

Vancouver Island on vacation, but it's been since 2000 the last time

we were there.

When you had your " seizure " did you also happen to have a very high

fever? I had febrile seizures as a baby when it is more common, but

adults tolerate a high fever even less well then babies do.

You say you haven't had a seizure before but your sister has...I

think you might want to press your doc a bit for further workup to

make certain it wasn't a seizure, family history and all. There are

plenty of meds available to control seizures and control them well.

As for hamburgers...you will have to make your own...I know we can

get very lean ground beef here in the States (7-9%) but I am also

happy to get 15%. I cook them on the stove top and them drain them

on paper towels to get more fat out of them. I have also bought a

Foreman grill (against my usual attitude of not making the

rich people richer on my money !) and use it for hamburgers or

chicken dishes...it drains the fat right out of them.

Much like people talk about having a " Sweet " tooth, I've heard it

said we also have a " fat " tooth...think of the things you really like

to eat the most...just the three things you mentioned as an example...

they taste so yummy because they are so high in fat !

You will find low fat versions of your favorite meals...you will

learn to fill up on veggies or salad and savor the one small or

medium sized slice of pizza instead of having half the entire thing!

I have learned to eat my favorite things very slowly, taking

small bites and really tasting what I am eating instead of just

inhaling it the way we usually do....and I no longer eat while

reading a book or watching TV...I try to concentrate and enjoy my

meals.

You might also ask your doctor or his nurse for a referal to a

dietician so you can get some ideas about low fat cooking...I also

think you ought to be able to find recipes out on the Web plus there

are a zillion authors in the larger bookstores that want you to buy

their book since it's the best one of course...

I hope I have offered you some helpful information...there will be

others who write...

Take care...Jeannine in WA

> Hi,

>

> I just wanted to introduce myself. I'm glad to see that there is a

> group on Pancreatitis out there that doesn't cost money to join

> My first visit to the hospital with acute pancreatitis was 5 months

> ago in January of 2003. > That was five months ago and today I

just got out of the hospital > from another five day stint on the IV

because of another pancreatitis attack. I originally thought one

visit to the hospital > and I'd be good to go. However, after doing

some research on the > web, and reading some of the posts, I realize

that I'm going to have > make some long term changes.

>

> I am now looking for low fat recipes (as I love hamburgers, pizza,

> cheese, I need find substitutes) so if you have any good ones let

me > know.

>

> In any event, I look forward to reading more from the group and

> hearing how you all cope. It looks like I will be dealing with

this > for awhile. >

> Best regards,> Rob Larsen

> Nanaimo, Vancouver Island, BC Canada

[Guest guest]

Cin

I am another from Michigan (), so know Ruth. Where in Michigan

do you live? Or isn't it Michigan?

I am the older sister, so I too, have been the one to get much of the

testing, although my sister , on the list has joined in in the

more recent years. We have three generations for sure that are

affected.

laurie

> Hello everyone,

>

> I'd like to introduce myself, and share a little about my family.

>

[Guest guest]

Welcome to ! Where in Michigan are you from? My sister

(Laurie) and I both also know Ruth. In am just outside of Detroit and

Laurie is between Ann Arbor and Lansing.

and mamamiomito wrote:

>Hello everyone,

>

>I'd like to introduce myself, and share a little about my family.

>First, to tell you my name, and

>how I found this group. My name is Cindy, but my family and friends

>call me Cin. I was at a picnic a couple of weeks ago,, and one of

>your members, Ruth, told me about the group. I have read only a few

>messages, but thought I'd jump right in, and get my feet wet.

>That's usually what I do, but the thing is, I go head-first, so my

>feet are the last to get wet .

>

>Well, to get to my family history, we are just now going through the

>process of being tested and confirmed with mitochondrial myopathy.

>My older sis is the guinea pig in all of this, and she's had an EMG

>and muscle biopsy, among other tests. The muscle biopsy did show

>abnormal mitochondria, so now the University of Michigan hospital

>has sent her tissue samples on to another clinic that specializes in

>mito diagnoses, and we are awaiting further information on that.

>Although it isn't 100% certain yet that it is MM, they are quite

>sure on this, and it's just a matter of formal

>diagnosis from here on out. Our family has a history of deafness,

>and many of us have bipolar disorder, or at least some type of

>mental dysfunction (mood swings, depression, SAD, etc.). There

>are several in my family with neuropathy, as well. When my sis went

>to the U of M in Ann Arbor to see the neurologist, she (the Dr.)

>thought right off it was either mito, or else Charcot-Marie-Tooth

>syndrome. Now with the muscle biopsy completed, they are leaning

>more fully toward the mito. I had heard of the mito before, but I

>mistakenly believed that it can only be passed on from the mother to

>the children. So, in my limited knowledge, I threw that out, as it

>was impossible for us, since the deafness, and other symptoms were

>passed on to my mother from her father, and his father passed it on

>to him. Well, lo and behold, there are some forms of mito that the

>father can pass on to the children, too.

>

>So, that's the medical history as far as our diagnosis, and now

>comes the fun of learning all about this disease, how it may affect

>us, how we can manage the symptoms, etc. And this is where I hope

>this group will come in, and be able to help us as we learn more

>about it. And of course, I'm a whimp, I don't like pain, so I'll be

>blubbering and slobbering about in here from time to time, while

>trying to dry the tears and blow my nose at the same time . I'm

>sure I'll have many questions for everyone, and will try to make

>some sense of all this, somehow. So, here I am, the new kid on the

>block, and I look forward to getting to know everyone. Feel free to

>ask me any questions you might have about our family, our history,

>or about just plain old me. I have no worry about sharing

>anything, as my two sister's already have enough on me to blackmail

>me for the next hundred years or so, LOL.

>

>I hope to hear from the group real soon, and I'm so glad Ruth has

>shared her group with me.

>

>Take care,

>Cin

>

>

>

>

>

>

>

>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]

Hi Cin, welcome to the group. I see the docs at U of M...go to school

there too. Make sure you stop by on monday nights to our chat group

on the MDA website.

bug

[Guest guest]

Hi , and thanks for the welcome. I am farther north than Ruth, you, or

your sister . I

live in Big Rapids, about an hour north of Grand Rapids. My mom, and my two

sisters, who also have

the (probable) mito, also live here in Big Rapids, so at least we can kind of

run symptoms by one

another, and if we all, or some of us have the same symptoms, can figure it's

from the mito, anyway

. Does your sister also have the mito? At least you are closer to some major

medical centers in

the state, and with the price of gas, that sure helps! I just found out today

that I have an

appointment in Ann Arbor to see the Neurologist on November 14th. But, that's

for another post, so

I'll send another message to talk about all that .

Take care,

Cin

----- Original Message -----

From: dgregori

Welcome to ! Where in Michigan are you from? My sister

(Laurie) and I both also know Ruth. In am just outside of Detroit and

Laurie is between Ann Arbor and Lansing.