New member

[Guest guest]

Welcome Barb. This is a great group of supportive people! Hope you find the

answers and support you are looking for here.

[Guest guest]

Hi Barb. Welcome to the list. This is a really nice list. I'm and I

as well as all four of my children are diagnosed with Mito. Each of my

children have varying issues and mine are not like any of there's either.

My youngest child has a feeding tube and has had reflux since birth. He had

a Fundoplication almost 4 years ago, but from time to time does have some

refluxing. The g-tube is only accessed when he's ill and to flush it now

thank goodness. He is 5 and in a regular ed kindergarten class. He has many

more issues as well on top of his Mito. issues.

My next oldest is 10 and has ADHD, dyslexia, some muscle weakness, vision

issues, and etc.

My daughters are 11 and 13 and both have severe learning disabilities. They

function at 6 and 5 respectively and each have their own issues.

I have migraines, seizures both of which are controlled currently with a

Mito. friendly anti-seizure med. I have muscle weakness mainly in my arms,

but I took a bad fall last week and I'm not sure if part of it wasn't from

weakening in my legs as well. I'm not sure. I also have GI issues, eye

issues etc.

Anyway, I guess I just wanted to say welcome. Feel free to e-mail me anytime

privately if you want.

Hugs!!

[Guest guest]

Barb,

Welcome to the group. Sorry you have to be here, but it is a

great group of people. There is a wealth of knowledge and a lot of

caring here.

Smiles,

a

[Guest guest]

Welcome Barb. I think you will find friendship and support here.

I'm glad you found us.

laurie

"

Reply-To:

Date: Sat, 15 Feb 2003 23:05:31 -0000

To:

Subject: New Member

Hi all my name is Barb aka matts_mom96, so glad to find this group! ,

my son Matt is 6 years old with a mitochondrial myopathy, seizures,

vanishing white and gray matter disease, mild autism-PDD, failure to

thrive, fed via g-tube, reflux, adhd, and he is my hero. Well I too

have a mitochindrial myopathy, my son was diagnosed when he was 3 yrs

old, and i have been on my doctors back to have me tested for years,

i suffer also from severe nerve damage, and degenerative bone

disease, RA, and sjogrens syndrom, and they said fibromyalgia-

fibromyalgia because i was a single mom of 3, terrible divorce, and a

multi-disabled child and raising two teenagers, chronic pain,

fatigue, migrains, must be fibromyalgia. I knew it wasnt

fibromyalgia. And once my son was diagnosed i knew for sure. I

Introduced my son Matt to my RA, who immediately knew it wasnt

fibromyalgia either. Well it's been wonderful, since then, I have 2

awesome neurologist helping me. Still cant keep up with my 2nd

husband or my older kids , they are very helpful and supportive, heck

i cant keep up with Matt on some days. Matt is on carnitine,

creatine, Q10 and it has really helped and i will be starting on my

own cocktail soon enough. hope to make some friends here!!! God

knows we all need friends, expecially ones that really know what its

like. Barb

[Guest guest]

welcome Barb

New Member

> Hi all my name is Barb aka matts_mom96, so glad to find this group! ,

> my son Matt is 6 years old with a mitochondrial myopathy, seizures,

> vanishing white and gray matter disease, mild autism-PDD, failure to

> thrive, fed via g-tube, reflux, adhd, and he is my hero. Well I too

> have a mitochindrial myopathy, my son was diagnosed when he was 3 yrs

> old, and i have been on my doctors back to have me tested for years,

> i suffer also from severe nerve damage, and degenerative bone

> disease, RA, and sjogrens syndrom, and they said fibromyalgia-

> fibromyalgia because i was a single mom of 3, terrible divorce, and a

> multi-disabled child and raising two teenagers, chronic pain,

> fatigue, migrains, must be fibromyalgia. I knew it wasnt

> fibromyalgia. And once my son was diagnosed i knew for sure. I

> Introduced my son Matt to my RA, who immediately knew it wasnt

> fibromyalgia either. Well it's been wonderful, since then, I have 2

> awesome neurologist helping me. Still cant keep up with my 2nd

> husband or my older kids , they are very helpful and supportive, heck

> i cant keep up with Matt on some days. Matt is on carnitine,

> creatine, Q10 and it has really helped and i will be starting on my

> own cocktail soon enough. hope to make some friends here!!! God

> knows we all need friends, expecially ones that really know what its

> like. 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.

>

>

[Guest guest]

I joined this group sometime in August before I left on Vacation, and

this week is an anniversary of sorts in that I have been able to

stick to the SCD diet for 2 months now!

And what a change it has made in my life! This afternoon my husband

even commented that he can hardly beleive how well this is working

for me and how much I have changed or improved.

I have known about SCD since 1998 when I was finally (officially)

diagnosed with UC (I think I had UC on and off since I was a new

born). But I could never stick with this diet for more than 4-6

weeks - long enough for me to go into a couple of remissions (sort

of) that lasted for 2-4 years at time. The last one lasted for 4

years, until the beginning of July (08) when I started bleeding

heavily again with severe D. With in a couple of weeks I was running

to the loo several times an hour!

I decided on July 21 (08) to give SCD another go - with in a week the

bleeding almost stopped and the D was only several times a day.

With in three weeks the bleeding was completely gone from what I

could see, and the D was down to 3x day. By the first month not only

was the bleeding completely gone, but so was the D and I had my

first 'trophies' a couple of times a day!

But that is not all. Between my last flare up and the four years that

past to this one - I had gained between 50 - 60lbs. I crossed in that

time period from normal weight to obesity. And in that 'sort of'

remission - I still had a lot of the symptoms of UC (That I realise

now) - occasional D and most of my stools were loose, with lots of

undigested food.

I thought as long as I wasn't bleeding - this was normal for me.

What else has happened in the last two months? Well I have lost

approximately 15 - 18lbs by eating what I want and when I want as

long as it is SCD legal (except for some pain meds). I found that I

am no longer constantly hungry! And what is also interesting is that

I am no longer 'bloated'! I can even bend my fingers!

I also suffered from pain (sometimes severe) in some of my large

joints and that has eased off - even headaches that I constantly

suffered from are subsiding!

Oh and that restless leg syndrome - I used to wake up 3-4x week with

it. I haven't had an occurance in at least 2 weeks now!

Since my husband and family have really noticed this on going

miracle - they are now my biggest cheerleaders! Which is really

unusual for them...So their support is a real help.

I would really like to thank Marilyn for this group and all the

members for all the work and effort they put into this group - as a

initial 'lurker' the posts have been and inspiration to keep me going!

Thank you

Lauretta K.

Ontario, Canada

UC diagnosed 1998

SCD 2 months

[Guest guest]

that is such a great story..congrads to you and welcome to the forum! keep it up!

Suzanne New memberTo: BTVC-SCD > I joined this group sometime in August before I left on > Vacation, and > this week is an anniversary of sorts in that I have been able to > stick to the SCD diet for 2 months now!> > And what a change it has made in my life! This afternoon my > husband > even commented that he can hardly beleive how well this is > working > for me and how much I have changed or improved.> > I have known about SCD since 1998 when I was finally > (officially) > diagnosed with UC (I think I had UC on and off since I was a new > born). But I could never stick with this diet for more than 4-6 > weeks - long enough for me to go into a couple of remissions > (sort > of) that lasted for 2-4 years at time. The last one lasted for 4 > years, until the beginning of July (08) when I started bleeding > heavily again with severe D. With in a couple of weeks I was > running > to the loo several times an hour!> > I decided on July 21 (08) to give SCD another go - with in a > week the > bleeding almost stopped and the D was only several times a day.> With in three weeks the bleeding was completely gone from what I > could see, and the D was down to 3x day. By the first month not > only > was the bleeding completely gone, but so was the D and I had my > first 'trophies' a couple of times a day!> > But that is not all. Between my last flare up and the four years > that > past to this one - I had gained between 50 - 60lbs. I crossed in > that > time period from normal weight to obesity. And in that 'sort of' > remission - I still had a lot of the symptoms of UC (That I > realise > now) - occasional D and most of my stools were loose, with lots > of > undigested food.> I thought as long as I wasn't bleeding - this was normal for me.> > What else has happened in the last two months? Well I have lost > approximately 15 - 18lbs by eating what I want and when I want > as > long as it is SCD legal (except for some pain meds). I found > that I > am no longer constantly hungry! And what is also interesting is > that > I am no longer 'bloated'! I can even bend my fingers!> I also suffered from pain (sometimes severe) in some of my large > joints and that has eased off - even headaches that I constantly > suffered from are subsiding!> Oh and that restless leg syndrome - I used to wake up 3-4x week > with > it. I haven't had an occurance in at least 2 weeks now!> > Since my husband and family have really noticed this on going > miracle - they are now my biggest cheerleaders! Which is really > unusual for them...So their support is a real help.> > I would really like to thank Marilyn for this group and all the > members for all the work and effort they put into this group - > as a > initial 'lurker' the posts have been and inspiration to keep me going!> > Thank you> > Lauretta K.> Ontario, Canada> UC diagnosed 1998 > SCD 2 months> >

[Guest guest]

Idid dulcolax pills with mirlax and used diluted white grape juice -

wasn't horrible as last years phospho soda prep - no pain just D as you

need to get anyone so the smidge of illegal - woudl giv eyuo that

anyway so I just went ahead and did it - was off after for weeks each

itme though - but that's me

eileen 10 months scd

endoscopy/colonscopy showed no inflammation so hang in!!!!

>

> My doctor has recommended that I go to a gastroenterologist for a

> colonoscopy. I am so not looking forward to this. Does anyone have

> any tips on how to get through the prep? Also do we have a good docs

> list? I would like to find one who is pro-SCD. I am located in

> Birmingham, AL.

>

> Lynn

> undiagnosed IBS

>

[Guest guest]

Thank you Eileen. Do you know if there is a list of doctors who are

SCD friendly?

Thanks,

Lynn

> >

> > My doctor has recommended that I go to a gastroenterologist for

a

> > colonoscopy. I am so not looking forward to this. Does anyone

have

> > any tips on how to get through the prep? Also do we have a good

docs

> > list? I would like to find one who is pro-SCD. I am located in

> > Birmingham, AL.

> >

> > Lynn

> > undiagnosed IBS

> >

>

[Guest guest]

Grammy gay usually sends out a list - I have it - if she doesn't

will send later

eileen - remind me if I forget thanks

> > >

> > > My doctor has recommended that I go to a gastroenterologist for

> a

> > > colonoscopy. I am so not looking forward to this. Does anyone

> have

> > > any tips on how to get through the prep? Also do we have a

good

> docs

> > > list? I would like to find one who is pro-SCD. I am located

in

> > > Birmingham, AL.

> > >

> > > Lynn

> > > undiagnosed IBS

> > >

> >

>