update

December 22, 2004

Hey Casey,

I sneezed today for the first time too (and second time, too,

actually! and as I was writing the next paragraph, the third time too

LOL). And absolutely lived through the experience. I was so worried

it would hurt or cause damage, or at the very least be a bloody

experience (as I still get nosebleeds), but it was none of the above,

and actually went just fine!

Are you banded at all? I think I could eat mashed potatoes, and other

soft things, but I can't get a spoon in between the bands. I have had

mashed potatoes, only I dilute them until I can drink them out of a

cup. It is one of my favorite things right now though! It's right up

there with eggnog shakes.

Glad to hear things are goin so well for you! Hope that pesky wire

gets clipped tomorrow!!

December 22, 2004

Hey Casey,

I sneezed today for the first time too (and second time, too,

actually! and as I was writing the next paragraph, the third time too

LOL). And absolutely lived through the experience. I was so worried

it would hurt or cause damage, or at the very least be a bloody

experience (as I still get nosebleeds), but it was none of the above,

and actually went just fine!

Are you banded at all? I think I could eat mashed potatoes, and other

soft things, but I can't get a spoon in between the bands. I have had

mashed potatoes, only I dilute them until I can drink them out of a

cup. It is one of my favorite things right now though! It's right up

there with eggnog shakes.

Glad to hear things are goin so well for you! Hope that pesky wire

gets clipped tomorrow!!

August 23, 2005

Jan,

We are keeping you close in thought and in prayer.

Hugs-

Ann

Update

Hi every one

I hope you have had a good summer.

We are in the process of doing an hospice eval for Duane I don't think that he

will qualify but the eval will give me some more information and hopefully some

ideas as how to help him, move him etc.

Speech therapist came yesterday,

Duane's voice is getting very hi pitched and airy it was nice she explained

why.

Does any one have this happen to them?

I have an appointment for the nuro on Monday.

We will see the physical therapist and then the occupational therapist after

that.

This will just give us a good base line.

Other than that we are doing fine I am focusing on the best quality of life

that I can provide for him.

Please keep us in your prayers

Hugs Jan

August 24, 2005

I will be keeping you and your family in my thoughts and prayers. If it is OK

with you perhaps I could have Duane's name as well as yours added to the Prayer

Line where I attend church?

Good luck and God Bless. Dolores

Jan jan_777@...> wrote:

Hi every one

I hope you have had a good summer.

We are in the process of doing an hospice eval for Duane I don't think that he

will qualify but the eval will give me some more information and hopefully some

ideas as how to help him, move him etc.

Speech therapist came yesterday,

Duane's voice is getting very hi pitched and airy it was nice she explained why.

Does any one have this happen to them?

I have an appointment for the nuro on Monday.

We will see the physical therapist and then the occupational therapist after

that.

This will just give us a good base line.

Other than that we are doing fine I am focusing on the best quality of life that

I can provide for him.

Please keep us in your prayers

Hugs Jan

September 25, 2005

Not that this is really pertinent to anything but Washington State is very a

beautiful state. I have a cousin-in-law in the Seattle area, several cousins in

the Yakima area and my cousin that took to home with her and her husband for the

holidays (due to the sudden death of my son, ) live just outside of

Colville. She has a very bad childhood and she virtually has a dream home. The

view is magnificent from her kitchen window and once there were eight deer at

the feeder plus her husband put feed for the wild turkey practically at their

back door so I could watch them. I am glad your family had an enjoyable time

(until the bug bit). God Bless, Dolores

Jan jan_777@...> wrote:Hi Guys

I took the family to the East coast of Washington the beginning of September (

we live on the west coast)

to the Rodeo had a great time, until Duane fell out of bed and split his head

open and had 13 stitches.

when we got home the nuro did a cat scan to see if he had a hematoma and it came

back negative.

we had a family reunion two weeks ago and over 2/3 of us came down with a fast

moving flu Duane and I were both sick at the same time ( not fun) but we are ok

now, Thank God!

we are still having the Pt, social worker and the home visiting nurse coming but

I don't think this will last for very long they are giving me some good ideas

though, techniques I did not know about, so it has been good for that.

We are going to the Pulminologest on the 11 for a evaluation for a cpap and

seeing the DR on the 12th I will continue to keep you all informed

and thank you for all of your prayers

Hugs Jan & Duane

December 8, 2005

Hi Adrienne-

Good to hear an update from you! It sounds as if you go 2 steps forward

in one area and 2 steps back in another. I'm sorry that you are continuing to

have so many ongoing and new symptoms appearing affecting so many different

organ systems. I have been continuing to pray for you. I wanted to tell you

that Cymbalta is a great drug and has an indication for Diabetic Neuropathic

Pain. You said that you were also on Lyrica for the neuropathy. You could

maybe talk to your doc about using the Cymbalta for multiple uses and that

could

eliminate one Rx med from your list. I know I like to be on as few meds as

possible and then there is less interaction and side effects to contend with.

Just a thought if that is an issue for you. I am in heart failure but have had

improvement in my EF since being on the beta blocker Coreg. I too have alot

of SOB and weakness and will be seeing a new pulmo in Houston later this

month. I haven't had any pulmonary tests done in many years so it should be

interesting to just see how my lungs are working now. Not sure if the SOB etc

is

from the heart or lungs or a combination. How is your GI tract working now as

far as motility? What are you taking for that now?

January 10, 2006

Hi , great news! No cancer found on latest cat scan. Time to

celebrate. Thanks again for all you support and prayers and

dragonflies! You are an Angel! Hugs, Barb

January 10, 2006

Barb,

I am so very happy for you, you have been through so much this is great news.

I will continue to keep you and your family in my thoughts and prayers.

Hugs,

Donna K

---- Barbara matts_mom96@...> wrote:

> Hi , great news! No cancer found on latest cat scan. Time to

> celebrate. Thanks again for all you support and prayers and

> dragonflies! You are an Angel! Hugs, Barb

>

> 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.

>

January 11, 2006

WONDERFUL!!!!!

Barbara wrote:

>Hi , great news! No cancer found on latest cat scan. Time to

>celebrate. Thanks again for all you support and prayers and

>dragonflies! You are an Angel! Hugs, Barb

>

>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.

>

May 20, 2006

Dr. Hirano seems very knowledgeable, if you can get in to see him. The only

other options (for truly knowledgeable docs) would be Korson in Boston or

Shoffner in Atlanta.

Irene Sussmann issnowwhite54@...> wrote: Hi everyone, I missed

Monday's chat cause I was not up

to par. Right now I am having more bad days than good.

But I am still thankful for what I am able to still do

and realize that it could be worse. I see alot has

happened with you all. Laurie, Kristie, etc. So

to all of you, I hope you all better times. I went to

my neuro doc on Thurs. He said he sees the disease

progressing in me. He want's me to go and get a

consultation and be seen at Columbia Pres. Hospital.

He suggested Dr. S. DiMauro, but I found out he is not

accepting new patients. Then I tried Dr. Cohen, no

good either. I tried general info. at Columbian Presp.

They couldn't help me with a mito doc. They didn't

have any listed on their referral list. I went on line

and found a Dr. Hirano or somthing like that. Only he

is not there alot. So I have to try and call in June

and see if he has a schedule. Can anyone suggest a

good mito doc to look me over. I have mito as you all

know. Just that my neuro wants me to at least have one

or two visits with a specialist. I live on Long Island

in N.Y. Also I found out that I too am having a

problem with my blood pressure. It is jumping way to

much, from high to low all in the same day. He also

recommends that I go for a scooter to take stress of

the energy I am using trying to not use the wheel

chair. My breathing has gotten worse, and there is

nothing he said he could do for that. Also that since

I am having head issues like brain fog or similar to

TIA's he wants me to go to hospital and try to get him

while it is happening. He feels my body is

intoxicating itself. He needs to look into it further.

Also he has scheduled some other tests again. The

recent test's he did on the biopsy I had in Jan. only

show that I have a mitochondrial disorder and probably

Melas. It was a very disappointing visit. Back to

testing further etc. because of my down ward trend

again. So if any one can suggest what I can do about a

mito doc. let me no. Other wise I will continue with

my neuro. Thanks to you all, and hopefully see you on

the chat group Monday.

__________________________________________________

May 20, 2006

Hi Irene,

Am I reading this right? That it was your Neuro that did the testing on your

biopsy? or did he send it out to be tested? You probably answered this already,

but i forgot. :-(

As far as your breathing issues go, your Neuro can send you to have your PFT's

done. That would give them an idea of what is happening.

As far as a Mito doctor, if you think you will need another biopsy then I would

suggest Dr. Schofner in Atlanta.

I am not sure if Dr. Hirano sees patients on a regular basis or if he is more

interested in research. But Schwartz from Fla. goes to Columbia Pres.

in N.Y. so you might want to ask her.

It is so hard to use our scooters, or wheelchairs. I think it has a lot to do

with dealing with the disease and what life has thrown at us. It is hard dealing

with a disease where you know you there isn't much that can be done for us. Put

remember if you use your scooter/ wheelchair that you will have more energy to

do the other neat and fun things that you can't do now, or that you have to

limit due to your decreased energy.

Sorry that you are dealing with so much right now. I hope you get some answers

soon.

Hugs,

Ann-Marie

Update

Hi everyone, I missed Monday's chat cause I was not up

to par. Right now I am having more bad days than good.

But I am still thankful for what I am able to still do

and realize that it could be worse. I see alot has

happened with you all. Laurie, Kristie, etc. So

to all of you, I hope you all better times. I went to

my neuro doc on Thurs. He said he sees the disease

progressing in me. He want's me to go and get a

consultation and be seen at Columbia Pres. Hospital.

He suggested Dr. S. DiMauro, but I found out he is not

accepting new patients. Then I tried Dr. Cohen, no

good either. I tried general info. at Columbian Presp.

They couldn't help me with a mito doc. They didn't

have any listed on their referral list. I went on line

and found a Dr. Hirano or somthing like that. Only he

is not there alot. So I have to try and call in June

and see if he has a schedule. Can anyone suggest a

good mito doc to look me over. I have mito as you all

know. Just that my neuro wants me to at least have one

or two visits with a specialist. I live on Long Island

in N.Y. Also I found out that I too am having a

problem with my blood pressure. It is jumping way to

much, from high to low all in the same day. He also

recommends that I go for a scooter to take stress of

the energy I am using trying to not use the wheel

chair. My breathing has gotten worse, and there is

nothing he said he could do for that. Also that since

I am having head issues like brain fog or similar to

TIA's he wants me to go to hospital and try to get him

while it is happening. He feels my body is

intoxicating itself. He needs to look into it further.

Also he has scheduled some other tests again. The

recent test's he did on the biopsy I had in Jan. only

show that I have a mitochondrial disorder and probably

Melas. It was a very disappointing visit. Back to

testing further etc. because of my down ward trend

again. So if any one can suggest what I can do about a

mito doc. let me no. Other wise I will continue with

my neuro. Thanks to you all, and hopefully see you on

the chat group Monday.

__________________________________________________

May 20, 2006

I do believe that Dr. Korson isn't taking any new patients now. He is truly over

booked and over worked.

Ann-Marie

Re: Update

Dr. Hirano seems very knowledgeable, if you can get in to see him. The only

other options (for truly knowledgeable docs) would be Korson in Boston or

Shoffner in Atlanta.

Irene Sussmann issnowwhite54@...> wrote: Hi everyone, I missed

Monday's chat cause I was not up

to par. Right now I am having more bad days than good.

But I am still thankful for what I am able to still do

and realize that it could be worse. I see alot has

happened with you all. Laurie, Kristie, etc. So

to all of you, I hope you all better times. I went to

my neuro doc on Thurs. He said he sees the disease

progressing in me. He want's me to go and get a

consultation and be seen at Columbia Pres. Hospital.

He suggested Dr. S. DiMauro, but I found out he is not

accepting new patients. Then I tried Dr. Cohen, no

good either. I tried general info. at Columbian Presp.

They couldn't help me with a mito doc. They didn't

have any listed on their referral list. I went on line

and found a Dr. Hirano or somthing like that. Only he

is not there alot. So I have to try and call in June

and see if he has a schedule. Can anyone suggest a

good mito doc to look me over. I have mito as you all

know. Just that my neuro wants me to at least have one

or two visits with a specialist. I live on Long Island

in N.Y. Also I found out that I too am having a

problem with my blood pressure. It is jumping way to

much, from high to low all in the same day. He also

recommends that I go for a scooter to take stress of

the energy I am using trying to not use the wheel

chair. My breathing has gotten worse, and there is

nothing he said he could do for that. Also that since

I am having head issues like brain fog or similar to

TIA's he wants me to go to hospital and try to get him

while it is happening. He feels my body is

intoxicating itself. He needs to look into it further.

Also he has scheduled some other tests again. The

recent test's he did on the biopsy I had in Jan. only

show that I have a mitochondrial disorder and probably

Melas. It was a very disappointing visit. Back to

testing further etc. because of my down ward trend

again. So if any one can suggest what I can do about a

mito doc. let me no. Other wise I will continue with

my neuro. Thanks to you all, and hopefully see you on

the chat group Monday.

__________________________________________________

May 21, 2006

Hi Irene,

I'm not sure why no one else ever recommends Dr. Sims at Massachusetts

General Hospital. She is a close colleague of both Dr. Korson and Dr.

DiMauro. I believe she has a lot of contact with Shoffner, too, though

I'm not as sure. I think she's excellent. (Can you get to Boston?).

I would say the only limitation with Sims is that Mass General can

only do frozen biopsies. (It's not clear to me whether you want

another biopsy or not.) However, if you can't travel to Atlanta to get

a fresh one, my understanding is that Mass General does frozen

biopsies better than most places. I had one there and have mixed

feelings about the fresh vs. frozen issue. If you are considering

another biopsy, I can say more about it if you'd like. If you don't

want a biopsy, but just need a specialist, Dr. Sims *is* a mito

specialist and I think she's very good.

Best to you,

Shayna

>

> Hi everyone, I missed Monday's chat cause I was not up

> to par. Right now I am having more bad days than good.

> But I am still thankful for what I am able to still do

> and realize that it could be worse. I see alot has

> happened with you all. Laurie, Kristie, etc. So

> to all of you, I hope you all better times. I went to

> my neuro doc on Thurs. He said he sees the disease

> progressing in me. He want's me to go and get a

> consultation and be seen at Columbia Pres. Hospital.

> He suggested Dr. S. DiMauro, but I found out he is not

> accepting new patients. Then I tried Dr. Cohen, no

> good either. I tried general info. at Columbian Presp.

> They couldn't help me with a mito doc. They didn't

> have any listed on their referral list. I went on line

> and found a Dr. Hirano or somthing like that. Only he

> is not there alot. So I have to try and call in June

> and see if he has a schedule. Can anyone suggest a

> good mito doc to look me over. I have mito as you all

> know. Just that my neuro wants me to at least have one

> or two visits with a specialist. I live on Long Island

> in N.Y. Also I found out that I too am having a

> problem with my blood pressure. It is jumping way to

> much, from high to low all in the same day. He also

> recommends that I go for a scooter to take stress of

> the energy I am using trying to not use the wheel

> chair. My breathing has gotten worse, and there is

> nothing he said he could do for that. Also that since

> I am having head issues like brain fog or similar to

> TIA's he wants me to go to hospital and try to get him

> while it is happening. He feels my body is

> intoxicating itself. He needs to look into it further.

> Also he has scheduled some other tests again. The

> recent test's he did on the biopsy I had in Jan. only

> show that I have a mitochondrial disorder and probably

> Melas. It was a very disappointing visit. Back to

> testing further etc. because of my down ward trend

> again. So if any one can suggest what I can do about a

> mito doc. let me no. Other wise I will continue with

> my neuro. Thanks to you all, and hopefully see you on

> the chat group Monday.

>

> __________________________________________________

>

May 21, 2006

I thought Dr. Sims was a Neurologist, not a Mito Specialist.

I recently called to get an appt. with her but she wasn't accepting any new

patients at the time, although this might have changed by now.