update

January 17, 2003

Diane,

In regards to your preeclampsia - I was preeclamptic in my first pregnancy pre

WLS 8 1/2 years ago but was not with this pregnancy. Think positively! Maybe

you won't have to deal with it this time!

Good Luck!

Debbie

update

Hi ladies,

Just wanted to update you and maybe get some feedback

I am 13weeks pregnant. I saw my doctor today, and since my 9weeks

check up I have lost nine pounds. She seemed concerned about this,

and told me she doesn't want me loosing anymore weight. I told her I

am trying my hardest to shove as much food in as poosible, and keep

it down.

In the beginning she didn't consider me " high risk " even though I

thought I should have been due to the surgery. She does now, due to

me having preeclampsia in my 2 prior pregnancies. She said that it

starts because of the placenta, which was discovered to be linked to

the father. Well since my husband is the same father as the babies in

my two other pregnancies, I am almost certainly with out a doubt

going to get this condition again.

Anyway, My biggest concern is the weight loss, when did it stabalize

for you girls and how did you achieve weight gain if you did?

Any and all feedback is much appreciated, Thanks in advance!

March 27, 2003

Adrienne, Don't feel bad about not replying to all of the posts. When you aren't feeling good, you have to take care of you. Everyone understands! :-) You still answer more posts than most of us could when dealing with what you are right now. I am sorry to hear that both you and your mom are having rough times right now. Just know I am thinking of you. When do you see your new neurologist?

Smiles,a

Hi guys,Just wanted to finally thank everyone that had written in response to me not feeling well the past few weeks. I try and keep up with this group (its been so busy lately) and try to respond to all posts i feel i can but lately just havent been able to, but just wanted yall to know i have read them and those of you who arent doing well or having problems with family, etc are in my thoughts and prayers and the ones who have had some improvement im so happy for you. Thought it would be easier to say that then to put in separate posts like i usually do. I just cant do that today- im still having alot of problems with dysmotility and weakness and also seizures and confusion. im trying to take it easy. my mom hasnt been doing well either so have been helping with her too. I saw my rheumatologist yesterday and she still feels i have a chronic infection going on causing most of my symptoms- shes really thinking its either lyme or strep. she really isnt for the mito idea but at least is willing to support me on trying to get it checked into. im telling her i think it might both be mito and a chronic infection. anyways, thats what the appt mainly was about- she also is taking me off some meds since i havent been able to take them anyways cuz of my stomach. i talked to her about my problems with walking lately and she told me best to talk with my new neuro about that. She also mentioned me having something called PANDAS syndrome which ill talk about in another post. anyways, just thought id update yall on this stuff. i have alot of appts next week (neuro, GI, etc) so hopefully something will be done to help me more. im going to go and try and respond to a few posts now. yall are in my thoughts and prayers.take care,adrienne

April 15, 2003

Adrienne,

I'm sorry you are going through so much right now. It seems as if when it rains it pours. I hope that you get some answers at your appt in Cleveland. June will be here before you know it. Good luck with your other appts this week. I'll be thinking of you.

April 15, 2003

Adrienne,

I am sorry that you have been dealing with so much right now.

You are right, getting sick generally does put us into a crash. Good

luck with your other appointments this week. It is nice to see you

posting again, but don't overdo!

Smiles,

a

April 15, 2003

Adrienne

Thanks for the update. It sounds as if things are finally moving along.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Tue, 15 Apr 2003 15:43:29 EDT

> To:

> Subject: update

>

> Hey guys,

> first time ive been able to get online in 2 weeks it seems. Ive been real

> sick with some respiratory infections and of course that just made me crash.

> Also been going to a bunch of drs and having tests run too. I saw a

> neuromuscular specialist in DC last week and he is wanting to wait till i go

> to cleveland to get blood tests, muscle biopsy, that forearm test, and a

> bunch of other tests done. also they want to do PFT's and other lung tests

> cuz of how my breathing probs have gotten worse lately. I also had a video

> swallowing test done earlier today with a speech pathologist which showed

> that my glottis is very weak and is catching solids when i eat. she also

> feels that with my gastroparesis when i eat bigger meals (when im able to)

> that when i use liquids to help with swallowing that they back up at the end

> of my esophogus due to the backed up food in my stomach and the liquids go up

> and into my lungs sometimes. not good. she says i need to talk with my gi dr

> more about this and what should be done but she did give me some tips. she

> also could tell i had issues with talking. she was very knowlegable and took

> extra time to talk with me, i was thankful for that. my gi dr wants me to

> have the gastric pacemaker put in. so im going to see a dr at cleveland

> clinic that deals with that too. my cleveland clinic appt has been moved up

> to june 17th with dr shields so that is great. the speech pathologist

> suggested going to kansas city though- said they knew about mito and also did

> the gastric pacemaker (she had talked to a dr about me that used to be

> there). anyways, im just going to stick with cleveland though since they do

> both and are well known for both. anyways, i gotta get going, i have more

> stuff i have to tell yall about but i have an appt with my PCP to see how im

> doing with my infections in 20 mins. ill write more later and try and respond

> to a few posts. hope yall are doing well and you all are in my thoughts.

> take care,

> adrienne

>

April 15, 2003

Dear Adrienne,

Glad to see you back posting, and I hope you feel better soon. Sounds as

if you are on the right track with all the testing.

I have found some of the peripheral medical personnel full of knowledge

and good suggestions. I had some very useful help from the person who

did my swallowing study.

To the best of my knowledge, the surgeon who invented the gastric

pacemaker is from Kansas City, so that is probably why that destination

was mentioned to you.

But I am sure the Cleveland Clinic will have your answers.

Good luck.

June 9, 2003

Adrienne

I hope that going off your supplements and meds will pay of when you make

your trip to Cleveland.

Congrats on the new boyfriend.

Have a good trip. I will keep you in my thoughts.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Mon, 9 Jun 2003 16:59:59 EDT

> To:

> Subject: update

>

> Hi guys,

> I havent really been able to keep up lately as much as id like. I had a SLE

> over the weekend that really freaked me out because i also had the severe

> pressure in my chest and heart palps and then the other normal symptoms i get

> though. im doing better now. I'm having alot of GI issues also- losing more

> weight

> and having alot of issues with swollowing too and some severe diahrrea. I lost

> control of my bowels twice last week- this rarely happens so it is a bit

> scary. im going off a majority of my meds for the cleveland trip next week. im

> staying on my seizure med, pain meds, thyroid med, meds for anxiety and the

> rest

> im already off of or in the process of it. i read here once that steroids make

> you unable to get a muscle biopsy. well, i went off mine few wks ago so im

> hoping to be able to get one this trip to cleveland. stopped taking zanaflex

> which has totally made my muscles go crazy. my hearing is getting worse too-

> im

> going to have checked out too- im thinking i might benefit from hearing aids

> now. some good stuff in my life though- well, going to cleveland next week so

> thats the first plus. going to canyon ranch in august with malisa! im really

> really looking forward to that. and i started dating a new guy that is just

> wonderful. im so occupied with him and my health right now i seem to be doing

> nothing else. he doesnt know about mito yet- i decided i wouldnt go into it-

> but he

> knows about how they have suspected lupus with me and he knows that i have

> alot of neuro, gi and muscular issues and he seems very supportive. well- i

> just

> want to let yall know you all are in my prayers and thoughts each day and i

> miss emailing you all regularly. ill try and write more before i leave sunday.

> i have several dr appts later this week anyways- ill go ahead and end this- my

> arms are really hurting (my upper body weakness is getting alot worse) and my

> migraine is coming back- time for a nap and pain meds.

> take care,

> adrienne

>

June 28, 2003

I will be thinking very positive thoughts for you on Tuesday.

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Sat, 28 Jun 2003 11:03:39 EDT

> To: mito ,

> Subject: Update

>

> Hi,

>

> I just wanted to give you all an update on things. I had my carnitine

> labs done on Mon. and Tues of this week to see if the carnitine is being

> reabsorbed into the mitchondria or not. I should have the results within 2 wks

> I think.

> Also I will be having my 2nd infusion of the IVIG on Tues. morning July

> 1st. I will be premedicated with a steriod and have a slower infusion rate

> over

> 5 hours. Hopefully that will eliminate the bad side effects I incurred the

> first time.

> Thanks for your thoughts and prayers. I'll let you know how it goes.

>

> The best vitamin for making a friend is B-1.

>

June 28, 2003

I will be thinking very positive thoughts for you on Tuesday.

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Sat, 28 Jun 2003 11:03:39 EDT

> To: mito ,

> Subject: Update

>

> Hi,

>

> I just wanted to give you all an update on things. I had my carnitine

> labs done on Mon. and Tues of this week to see if the carnitine is being

> reabsorbed into the mitchondria or not. I should have the results within 2 wks

> I think.

> Also I will be having my 2nd infusion of the IVIG on Tues. morning July

> 1st. I will be premedicated with a steriod and have a slower infusion rate

> over

> 5 hours. Hopefully that will eliminate the bad side effects I incurred the

> first time.

> Thanks for your thoughts and prayers. I'll let you know how it goes.

>

> The best vitamin for making a friend is B-1.

>

June 28, 2003

,

I will be thinking of you on Tuesday and hope that things go better this

time around. BTW, I love your signature closure.

LILQT4U1984@... wrote:

Hi,

I just wanted to give you all an update on things. I had my carnitine

labs done on Mon. and Tues of this week to see if the carnitine is being

reabsorbed into the mitchondria or not. I should have the results within

2 wks I think.

Also I will be having my 2nd infusion of the IVIG on Tues. morning

July 1st. I will be premedicated with a steriod and have a slower infusion

rate over 5 hours. Hopefully that will eliminate the bad side effects I

incurred the first time.

Thanks for your thoughts and prayers. I'll let you know how it

goes.

The best vitamin for making a friend is B-1.

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.

June 28, 2003

,

I will be thinking of you on Tuesday and hope that things go better this

time around. BTW, I love your signature closure.

LILQT4U1984@... wrote:

Hi,

I just wanted to give you all an update on things. I had my carnitine

labs done on Mon. and Tues of this week to see if the carnitine is being

reabsorbed into the mitchondria or not. I should have the results within

2 wks I think.

Also I will be having my 2nd infusion of the IVIG on Tues. morning

July 1st. I will be premedicated with a steriod and have a slower infusion

rate over 5 hours. Hopefully that will eliminate the bad side effects I

incurred the first time.

Thanks for your thoughts and prayers. I'll let you know how it

goes.

The best vitamin for making a friend is B-1.

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.

July 24, 2003

Let's see if I can explain a port. I'm not sure where they would put it, but

it stays in and then a needle is put into the rubbery thing on the end of

the line that comes out. This is usually a few inches long. If you think of

an IV line where they can add an additional bag of say an antibiotic and

they connect it to the main line by putting a needle in the little rubbery

thing.

I had my consults with anesthesiology the day before my surgery. I will warn

you that the person you see will not necessarily the one you will have. Let

me see if I can come up with the anesthesiologist that I had. His wife has

mild mito and he was wonderful. I think I will recognize on the CCF website

and will let you know his name. Maybe you could request him.

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Thu, 24 Jul 2003 11:53:46 EDT

> To: mito ,

> Subject: update

>

> Dr. Cohen called this morning and spoke with my mom concerning our list of

> questions. He said he see's the IV Carnitine being long term. He said no to a

> broviac, but yes to a port. Sooo you know now that I need to hear from all you

> port experts. (Dawn I know you are cheering about that one. hehe) He said I

> would have more freedom with a port although he knows I'm not active and out

> swimming etc. Also he is concerned about my infection rate with a broviac

> since

> I have an immune deficiency. He said I would need to discuss this with my

> surgeon and together we could decide what would be best for me. He said the

> port

> would last 3 yrs and that we could leave the needle in it for 1 month. I need

> come clarification on that one please. He said that I could use Dr. DiFiore if

> I want, but that there are other surgeons in his group that are good and he

> reccomended a Dr. as well. Anyone used him? As far as how treatment

> would change from having this done he said that was a very gray area. He just

> doesn't know. He said you could get nothing from it, negative results, or

> possbily find something. The time frame to get resutlts will be 2-10 days and

> then

> 3 weeks for the rest. If something needed to be sent off then thats when you

> get into the months of waiting. CAT testing is an enzyme antigen test that

> measures how the kidneys are reabsorbing the carnitine. He wants me to stay a

> few

> days after the procedures. He said there was no way he was sending me back to

> KY for awhile. LOL He is SOOO right. My mom was in total agreement. He said if

> need be he will admit me to the hospital. All my meds have to be stopped 2

> weeks in advance. (Malisa I hope that answers your question. ) My testing from

> Dr. Rhead should be back soon, but he didn't know when. He was very upfront in

> saying that I didn't need to rush and decide about this. And even after I'm

> scheduled if I get cold feet it's fine to cancel because there are 10 people

> on

> the waiting list. Fran is going to call us with the dates. He is having me set

> up for a pre-op consult with the surgeon and anesthesiologist as well. Would

> you think that would be the day before?? He wants me to have another EKG and

> Echo done beforehand as well. Shoo..I hope I remembered to tell you

> everything.

> I feel some what better..but still not certain as to what I should do. Please

> keep praying. Thanks for helping me out again.

>

July 24, 2003

,

I really don't have any answers for you, but in my mind, the port would be something that would be beneficial. I have talked about ports with Malisa, and it sounds like it might be the right thing for you, although you are the only one who really knows that. I don't have any answers, but you are in my thoughts and prayers. If you need to talk, feel free to e-mail me!

Smiles,

a

Dr. Cohen called this morning and spoke with my mom concerning our list of questions. He said he see's the IV Carnitine being long term. He said no to a broviac, but yes to a port. Sooo you know now that I need to hear from all you port experts. (Dawn I know you are cheering about that one. hehe) He said I would have more freedom with a port although he knows I'm not active and out swimming etc. Also he is concerned about my infection rate with a broviac since I have an immune deficiency. He said I would need to discuss this with my surgeon and together we could decide what would be best for me. He said the port would last 3 yrs and that we could leave the needle in it for 1 month. I need come clarification on that one please. He said that I could use Dr. DiFiore if I want, but that there are other surgeons in his group that are good and he reccomended a Dr. as well. Anyone used him? As far as how treatment would change from having this done he said that was a very gray area. He just doesn't know. He said you could get nothing from it, negative results, or possbily find something. The time frame to get resutlts will be 2-10 days and then 3 weeks for the rest. If something needed to be sent off then thats when you get into the months of waiting. CAT testing is an enzyme antigen test that measures how the kidneys are reabsorbing the carnitine. He wants me to stay a few days after the procedures. He said there was no way he was sending me back to KY for awhile. LOL He is SOOO right. My mom was in total agreement. He said if need be he will admit me to the hospital. All my meds have to be stopped 2 weeks in advance. (Malisa I hope that answers your question. ) My testing from Dr. Rhead should be back soon, but he didn't know when. He was very upfront in saying that I didn't need to rush and decide about this. And even after I'm scheduled if I get cold feet it's fine to cancel because there are 10 people on the waiting list. Fran is going to call us with the dates. He is having me set up for a pre-op consult with the surgeon and anesthesiologist as well. Would you think that would be the day before?? He wants me to have another EKG and Echo done beforehand as well. Shoo..I hope I remembered to tell you everything. I feel some what better..but still not certain as to what I should do. Please keep praying. Thanks for helping me out again.

April 8, 2004

My family lives in Marshfield (near Plymouth) where are you from?

Dana Farber is supposed to be cutting edge and it sounds like this new drug

may be just what your husband needs to fight this thing.

You have a good attitude.

In the Boston area I don't envy your house hunting efforts! Housing doesn't

come cheap!

But I think overall you are doing the right thing.

Hang in there you just never know

I'll be praying for you all.

Narice

April 9, 2004

Hi : Know what you mean.I'm in Florida and I came from Mass. But

been here 44 years and my kids and grandkids too. Boon for us,real hard for you.

But

there are some of the best centers in the world there and certainly they are

in the

forefront of any new trials. I have a sister in Gloucester with breast

cancer,we talk

weekly. You have a great attitude and what a wonderful family, Being

positive(buying

a house) is a great step and you must be super to be able to read every day.

hang

tough,this is a great place to talk, to query,to vent and just to hang

out,seems that

just about any new treatment,protocol or procedure show up here. Hang

tough,keep

the faith and may you all share a Happy Blessed easter Hugs and prayers Nick &

Jane

April 9, 2004

Hi : Know what you mean.I'm in Florida and I came from Mass. But

been here 44 years and my kids and grandkids too. Boon for us,real hard for you.

But

there are some of the best centers in the world there and certainly they are

in the

forefront of any new trials. I have a sister in Gloucester with breast

cancer,we talk

weekly. You have a great attitude and what a wonderful family, Being

positive(buying

a house) is a great step and you must be super to be able to read every day.

hang

tough,this is a great place to talk, to query,to vent and just to hang

out,seems that

just about any new treatment,protocol or procedure show up here. Hang

tough,keep

the faith and may you all share a Happy Blessed easter Hugs and prayers Nick &

Jane

April 9, 2004

Hi : Know what you mean.I'm in Florida and I came from Mass. But

been here 44 years and my kids and grandkids too. Boon for us,real hard for you.

But

there are some of the best centers in the world there and certainly they are

in the

forefront of any new trials. I have a sister in Gloucester with breast

cancer,we talk

weekly. You have a great attitude and what a wonderful family, Being

positive(buying

a house) is a great step and you must be super to be able to read every day.

hang

tough,this is a great place to talk, to query,to vent and just to hang

out,seems that

just about any new treatment,protocol or procedure show up here. Hang

tough,keep

the faith and may you all share a Happy Blessed easter Hugs and prayers Nick &

Jane

April 9, 2004

Narice,are you from the Bay State or just some family members? I was born in

Arlington Mass,but most of family is in the North

Shore(Salem,Gloucester,Rockport)

You are right,between Mass General,Leahy Clinic and Dana Farber there are

really top notch programs,many associated with some prestigious universities.

You

always seem to know just what to say to people. When we were small we lived

in

Stoneham,Everett,Watertown and then we moved to Gloucester. I have been in

Miami

for 44 years but Mass., will always be my home state. Happy Blessed Easter

Nick & Jane

April 19, 2004

Hildreth,

While you sure had a rough visit, it sounds like good news for the

most part. Glad to hear it!

Sharon

> I went to my Dr appt this morning even though at first I did not

think I could make it. I was suppose to take two fleet enema's after

the one I thought I would cramp to death and got sick to my stomach.

I called and they said not to take the second one but he really

needed to see me.

> It is a 45 minute ride for me so was nervous about that.

> It really was a wasted trip from my point of view. He used a sig

and looking at the monitor I told him the opening appeared much

larger then it has the last two times. He said it might be

magnification or something. Oh well I tried. Then he called for other

instruments and I have no idea what he did but it hurt and I was

bleeding when I got home. My surgeon had told me this was the Dr that

did the stent's and that is what he was to talk to me about this

morning. All I got was I will talk to Dr. Faried and one of us will

be calling you. He did state it did not look like I required surgery

at this time. I questioned if I had to be hospitalized for stent and

from his answer I take it is done under sedation in his office. I

asked about balloon stretch and all I got was something about scar

tissue growing.

> I already knew about my biopsy not showing cancer. That is exactly

what he told me but said they don't know what it is and will have to

watch it. He was going to have me have another cat scan but I

informed him I had one about 2 weeks ago!

> I at least got a answer when I asked about my last CEA. It is down

to 5.9 and he asked if I was a smoker which I am. In the last three

months it has been 7.1,6.8 and now 5.9. The other cancer surgeon has

told me he would not worry about it unless it started jumping all

over so this sounds good. I think the other cancer surgeon plans a

MRI and CEA next month to check the tiny spot on pancreas. At least

that did not show up in PET. So far the two spots that did show up in

the PET have been biopsied and are not cancer.

> All I do know is I am to stay on soft diet or he said I would end

up in the ER.

>

> Hildreth

>

April 19, 2004