Introduction

[Guest guest]

a,

Welcome to group, I'm so sorry it had to be under these circumstances.

Just know that you have found a wonderful group of ladies here. And we

can all understand what you are going through. It will get better with

time.

You are in my thoughts and prayers.

Love & hugs,

Jo-Ann

a Quintero wrote:

>

> Hello Ladies,

> My name is a. I have been married to my

husband for 2 yrs his name is Jai. I have 2 beautiful boys 10 and 7.

I just recently suffered from an ectopic pg the 8th of Oct. I am having a very

hard time with this. I know you all know what I meen. I had a Tubal reversal in

June and ended up Pg the second time TTC. We were just jumping up and down!!!!

The thing that sucked so much is I had a ultrasound at 5.5 weeks that showed a

gestational sac in the uterus. My betas every 48 hrs were doubling like they're

supposed too. We thought we were in the clear. I had an awful pain on the right

then started spotting 4 days later. I went to the Er and sure enough there was

a 1 in by 1 1/2 in mass in the right tube. They did a lap and I was already

bleeding internally so they took my right tube. They ran dye through the left

and said I have free flow but of course I am terrified to ever try again. They

say I have an 85% chance. I don't know if I could

> handle this again. I am crushed. I knew this was a risk with the reversal but

you never think it will happen to you. I am very much looking forward to

meeting everyone. I figure the only support that will help will come from ladies

that have been where I am. I am sorry we have all suffered this awful lose.

There have been days that I really don't think I'm going to make it.

> I was wondering if anyone else here has

suffered a tubal Pg due a tubal reversal?

> Well, sorry this is so long. I posted before

but I don't think it came through I had been having problems with my email.

> I will be looking forward to hearing from you

ladies. I am very happy to have found this group!!!! God Bless and prayers to

you all!!!!!

> God

Bless ~~ a

>

>

>

[Guest guest]

a,

I am very sorry for your loss, but i am glad you have come to such a

supportive place. We are all here to help each other through it all. Take

care.

Tara

[Guest guest]

Marie,

What a wonderfully large group you have!!Easter Seals has been paying for my daughter s Co Q-10. I have written a letter to our insurance Blue Cross/Blue Shield asking them to pay for it and it is still in review. Also our Childrens Rehab is paying for doctors visits, copays, what our insurance does not cover on meds, and they have just measured for a power wheelchair. They will pay for what the insurance wont. Easter Seals is also paying for a ramp or lift for my van with any other modifications we need. They decided on a power chair because you can only ask insurance every 5 years to pay for a chair and if her condition continues to go down hill and we had gotten a manual chair we would be up a creek and not able to get them to refile for a powerchair. So we went for the ranger x powerchair, a middle of the road, basic chair that could be modified later to fit her needs.

Hope this helps. feel freet to email directly if you have other questions.

Happy Holidays!

Horsley

Mom to 11

leehorsley@...

[Guest guest]

Wonderful news, ! Merry Christmas to you and and all your family, and we hope all of the extra help makes a real difference - both to quality of life for and you and the stress levels associated with trying to provide all you can.

Virginia, Emma's Mom (2 1/3 yrs. Complex I)

Virginia M. Buchanan

[Guest guest]

Hi Marie,

I just wanted to welcome you to the list. I am glad you finally made your presence known. I am sure you will find much help and support here.

Introduction

Hi to all,

My name is Marie and I am mom to eight children ages 23, 20, 17, 15, 11, 7, 5 and 2 years old. We live in Pennsylvania outside of Philadelphia.

I subscribed to this list about 2 months ago and have been reading and trying to absorb the vast amount of information I've received here. You've all helped tremendously without knowing it. I never formally introduced myself prior to this as in my heart I was hoping that I really didn't belong here and there was some other explanation for the heartbreaking medical things we have been dealing with in our kids.

We saw Dr. Bruce Cohen with four of our children this past week (19th and 20th) and arrived home on Friday morning. Based on all the testing results we provided (muscle biopsy, amino acids/organic acids, etc...) and a long list of clinical symptoms.........Dr. Cohen diagnosed us with a Mitochondrial disorder. We're probably dealing with MELAS.

I'm rather fried at the moment. It has been a long and exhausting road to this point of feeling like I see things that really aren't there and many times being made to feel like I am the one with the problem and not my kids. I think you all understand what I mean by this.

The very first person who was able to put this all together for us was Ken Hirsch from the list. We met him for the first time several months ago and after reviewing all the info we brought him told us he felt we were dealing with Mito. He is now our Doc for six of the kids. We feel very blessed to have him. He has been a wonderful source of information and support for us and is a truly wonderful human being. Poor guy had no clue what he was getting himself into taking us on. :) (Thanks Dr. Ken.......I promised you that I would seek support after Cleveland and I WILL be at the next DEL VAL meeting!

There are a couple moms on this list that I know from another list. Hi Kass, e, Heidi!!!

The list of kids and symptoms are long. If anybody really wants to know I'll be happy to share. I didn't want to write a book on my first post.

My very first question to you is regarding CoQ. With a family this size we are talking a lot of CoQ. Are any of you able to get this covered by insurance? What are the best sources to obtain it? I need liquid and pills. At this point four of the kids are going to start carnitor as well. Things may change once the tests Dr. Cohen did are back.

Any advice would be greatly appreciated.

Marie

Please contact mito-owner with any problems or questions.

[Guest guest]

Welcome to the club.

We have yet to get our insurance to pay for the Pediasure we feed

Maggie through her G-tube neer mind the Q-10. We do get re-imbursed

for Q-10 and her suplemental Vitamin E through The Department of

Mental Retardation. Try 1-800-joe-k4Rx. That might be only the state

of Massachusetts, but Pa might have similar.

Best wishes & Merry Christmas,

Jeff

[Guest guest]

Hey Jeff and all

In the past, Cassie was on pediasure, I too found it hard to keep up with

the cost of it. So, I contacted the company that makes it and asked for

coupons. They in turned sent me several, I think they were like a dollar

off on a six pack. Not alot, but every little bit helps. Not sure if a

800# was on the can, but that was the route I went. Sorry I don't have that

info any more, hope you can find it and have the same luck I had back then.

They also told me when I ran out just to call again and they would send

additional coupons--I had a really nice person I spoke with, hope this

wasn't a rarity. Good Luck

Re: Introduction

> Welcome to the club.

> We have yet to get our insurance to pay for the Pediasure we feed

> Maggie through her G-tube neer mind the Q-10. We do get re-imbursed

> for Q-10 and her suplemental Vitamin E through The Department of

> Mental Retardation. Try 1-800-joe-k4Rx. That might be only the state

> of Massachusetts, but Pa might have similar.

>

>

> Best wishes & Merry Christmas,

> Jeff

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Hi Everyone

My name is Kate Oppenheimer and I have just joined the Asherman's Group, but

have suffered from this condition for nine years. I live in Hampton, near

London, in the UK.

After the birth of my second child in February 1993, when I was 31, I had

serious complications. When my baby was a week old I had to go back in to

hospital. I was haemorrhaging (probably due to a retained piece of

placenta), but the blood was not being expelled from my womb and I also had

a resistant E.Coli infection. I had three D & Cs in a 10 day period and spent

three weeks in hospital. My periods never returned. After a series of

investigations - hystosalpingogram and two hysteroscopies - it was

established that I have severe Asherman's Syndrome. In fact so bad that the

doctor could not even get the probe in to my uterus during the second

hysteroscopy where he had wanted to try to release the adhesions.

I was offered a choice of major surgery to try to correct the condition,

with no guarantee that it would work, a hysterectomy or medication to stop

the pain that I suffer every month. I was also told that the condition would

prove no threat if I left it and would not worsen. Since I had two healthy

children, a girl and a boy and was lucky to be alive, I decided to do

nothing except treat the pain. By far the best treatment I have found has

been acupuncture, which had a really long term effect, but I am now finding

the pain is increasing and I had such a bad episode last month that I am

seriously considering a hysterectomy.

Having read some of your stories on the web, I feel quite fortunate - at

least I have two healthy children. I would be really interested to hear from

anyone who has useful tips on pain control and particularly from anyone in

the UK who knows of any specialists in this field.

Thanks for your interest, I look forward to hearing from you.

[Guest guest]

Kate, welcome to our group. There has been a number of UK members who have

joined recently. I am happy that the UK members are increasing, but only to

show that it is not rare in the UK. I'm sorry to hear that you have

suffered with Ashermans for 9 years. What a horrible thought to have to

have this syndrome and not get any support from others who are going through

the same thing as yourself. I bet you thought you were a freak and the only

one who was with this syndrome? I know I did until I started this group.

As I had said to you in reply to your introduction, I am sorry to hear that

your doctors have even suggested a hysterectomy to treat your ashermans.

Unfortunately, we have not found any doctor in the UK to date who is a

specialist for Ashermans. Dr Magos, is one doctor that is known to have

done a few Ashermans surgeries and he is in the Royal Free Hospital, but we

don't have any success stories in this group yet. Quite a few UK members

have travelled to Germany to Dr Gallinat and they are quite happy with him.

His treatment costs about a third of what it would do in UK. I don't know

what your options are on seeing him, but would recommend him to you if you

are considering.

I found what you wrote about acupuncture to be quite interesting.

Acupunture has been found to help build up the lining of the uterus. If you

have a blocked cervix, and it sounds like you do, then what is probably

happening is that although your lining is improving, there is no exit for

your blood to come out. It therefore is probably exiting out of your tubes

and emptying in your abdomen. Over a number of years, this has been known

to cause endometriosis. It just seems so likely that this is what has

happened to you, especially as you have had it for 9 years. Were you always

in so much pain? I mean, ever since you were diagnosed with Ashermans? If

not, then this is just some proof of what I have said.

What you need to do is start your search for a good doctor who is willing to

clear your adhesions and cervix, to be able to release the blood you are

depositing each month. Once this is done, he will need to check you for

endometriosis too. I believe this is what you may have. You will need to

get this treated.

I know you may not be considering any more children, but if you are in so

much pain, then you shouldn't have to suffer like this and a surgery is

required.

Hope my email has helped you in some small way. Please ask us any questions

which you may have. We will try to give you answers.

Poly

[Guest guest]

Hi Kate,

Very sorry to see you've had to come here, but good to see you found us.

Nice to see another face from UK, I am North London.

I'm very new to the site as well.

Sorry this is so brief, but Poly is making me work so I haven't got much time

lol.

Keep in touch

Lesia