Re: to all members

[Guest guest]

Right now I am very sure that you are in shock and feeling grief with your

diagnosis. Take the time to allow yourself to feel. MELAS is a set of

syndromes that affect each of us differently. I myself was dx'd with it 13

(well

nearly 14!) yrs ago. Getting dx'd is part of the battle...others on the list

will

tell you their different dx's. There are varying things that you may find

helpful to yourself that Dr's recommend (like Shoeffner in atlanta) and others

on the list use either wheelchairs or scooters or both. Resting and learning

to conserve your energy is a part of it all. (hugs you are not alone) Vivian

[Guest guest]

Give yourself time to adjust to the news. When ready, start to read

and ask questions here. Knowledge is power and you can start taking

control of your life. Don't rule out counseling. I have used

counseling both before and after my diagnosis.

There are services out there that can help you. Through the department

on aging, even if not in that age bracket, can offer free to low cost

housekeeping, yard work, home repairs and self care. Depending on

insurance and such, some type of home health care might be ordered by

the doc. Just using a wheelchair or scooter can make so very much

difference in how much you can do when walking is eliminated or cut

down. I live alone and know that I have concerns about how long I can

stay in my home and take care of myself. My biggest desire is that I

will know when the time has come that I need to make changes in my

living arrangement.

Gentle hugs,

laurie

> if you could help me in this matter I would appreciate it greatly. I

> had just returned from a doc. visit. He and I discussed the findings

> of this biopsy. He is having more test done. But it is determined

> that I have Mito. He feels Melas syndrome. Doc and I have been

> through thick and thin and I trust him very much. Well his advice and

> his knowledge in this disease, informed me that I am to do nothing.

> Because of the shape I am in. He said it is bad. It just took along

> time to diagnose, while I deteriated. Now I was told to do absolutely

> nothing but to use a wheel chair instead of walking or he would order

> me a scooter, which ever I prefer. But not to walk hardly at all. My

> energy level is critical. My blood test results showed a very high

> Lactic acid and CPK levels were off the chart by alot. My breathing

> has been a number one problem which we are dealing with. But upon

> finding this all out, I left his office feeling nothing. Here's the

> problem, My sister and I are together, living in same house. Her

> upstairs and me downstairs. We had buried both our parents at a very

> young age. Both our parents required alot of medical help. They both

> needed to be taken care of by us, cause their were of young age and

> couldn't receive medicare, etc. Since they were both young we didn't

> want to put them in a nursing home, and we felt we could do it.

> Sister would take the days, and I would take the nights. Well, we did

> our good deed. After our parents were gone. We swore we would never

> do it again for anyone, because of the way it affected us health and

> mentally. Well, here I am needing to be taken care of in some things.

> My husband has been through this with us and done his share. I can't

> ask them to take care of me now. It is very hard to accept. I didn't

> want to be a burden like my mother and father were. Plus now my

> sister and I have health problems, My husband had a major heart

> attack two years ago, works 6 days a week, and my sister now has a

> family of her own, and her own marital and medical problems. How did

> you people stay from getting depressed and dealing with the fact of

> this disease. I have become very emotional and depressed. Any

> suggestions as to how to deal with this would be greatly appreciated.

> Joing some of these mito groups have helped. I feel I have someone to

> talk to, since I don't want to of feel I can talk to my family,

> because of what we had already gone through.

>

>

>

>

>

> 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]

I have a MELAS " phenotype " (= not proven genetically, but all

symptoms and muscle biopsy results (severe Complex I defect) point to

it) dx, and am doing pretty well. I work 40 hours per week, and play

sports twice a week and am on a low carb, high fat, high protein diet

(which probably means my fatty acid metabolism is good, but my carb

metabolism is bad). I feel that I've gotten a good combination of

supplements and medications, mostly from the mito cocktail list (in

the files section I think) but some from other specialists like GI

doctors. And the diet works well for whatever detailed metabolic

issues I have.

Before I found out the best combination of supplements/meds/diet for

me, I was seriously considering applying for SSDI - I couldn't drive,

couldn't walk very far, and had almost continual vision problems.

When working 40 hours per week at that point, I would share a car

ride home and sleep within an hour of getting home, and the 10+ hours

of sleep wouldn't help. I also used to black out a lot.

I think it is worth mentioning that there are (dare I say) many of us

who at least feel stabilization of their symptoms when on some of the

mito cocktail list supplements and meds. And there are some like me

who have significant improvements.

There may be some control over your condition - I would have doubted

that if I hadn't experienced it myself. We are all different, and

some don't have the ability to use the mito cocktail list as a guide,

either because they can't find a doctor willing to support them in

this, or because various supplements or medications are hard to find

or too costly.

I myself don't have recognition of my illness by my family, except by

my husband, my kids, and my father. Most of the others don't believe

I am ill, or believe it is symptomless because I don't see them when

I am experiencing symptoms.

Finally, one of the first things I read online about a person with a

MELAS indicated that MELAS is terminal within a few years. It seems

that person ended up with additional illnesses, and had a quick

progression, but I have to say 11 years after my first symptoms, I'm

still kicking and better than I was for the first 7 years of

symptoms, due to focusing on the supplements/meds/diet that help me

best. Realize that most of us have unique illnesses, where the exact

problem with the mitochondria and metabolism is not clear. An

example of this would be other people with Complex I defects doing

poorly on a low carb diet, but it is HUGE for reduction in my

symptoms. Another example is that I and a few others do not do well

on CoQ10 - other people have excellent results with it.

I hope you find some ways to feel better - as you said, finding

people to talk to (even over the 'net) is important.

Take care,

RH

-- In , Laurie Fitzgerald

wrote:

>

> Give yourself time to adjust to the news. When ready, start to read

> and ask questions here. Knowledge is power and you can start taking

> control of your life. Don't rule out counseling. I have used

> counseling both before and after my diagnosis.

>

> There are services out there that can help you. Through the

department

> on aging, even if not in that age bracket, can offer free to low

cost

> housekeeping, yard work, home repairs and self care. Depending on

> insurance and such, some type of home health care might be ordered

by

> the doc. Just using a wheelchair or scooter can make so very much

> difference in how much you can do when walking is eliminated or cut

> down. I live alone and know that I have concerns about how long I

can

> stay in my home and take care of myself. My biggest desire is that I

> will know when the time has come that I need to make changes in my

> living arrangement.

>

> Gentle hugs,

> laurie

>

>

> > if you could help me in this matter I would appreciate it

greatly. I

> > had just returned from a doc. visit. He and I discussed the

findings

> > of this biopsy. He is having more test done. But it is determined

> > that I have Mito. He feels Melas syndrome. Doc and I have been

> > through thick and thin and I trust him very much. Well his

advice and

> > his knowledge in this disease, informed me that I am to do

nothing.

> > Because of the shape I am in. He said it is bad. It just took

along

> > time to diagnose, while I deteriated. Now I was told to do

absolutely

> > nothing but to use a wheel chair instead of walking or he would

order

> > me a scooter, which ever I prefer. But not to walk hardly at

all. My

> > energy level is critical. My blood test results showed a very

high

> > Lactic acid and CPK levels were off the chart by alot. My

breathing

> > has been a number one problem which we are dealing with. But upon

> > finding this all out, I left his office feeling nothing. Here's

the

> > problem, My sister and I are together, living in same house. Her

> > upstairs and me downstairs. We had buried both our parents at a

very

> > young age. Both our parents required alot of medical help. They

both

> > needed to be taken care of by us, cause their were of young age

and

> > couldn't receive medicare, etc. Since they were both young we

didn't

> > want to put them in a nursing home, and we felt we could do it.

> > Sister would take the days, and I would take the nights. Well,

we did

> > our good deed. After our parents were gone. We swore we would

never

> > do it again for anyone, because of the way it affected us health

and

> > mentally. Well, here I am needing to be taken care of in some

things.

> > My husband has been through this with us and done his share. I

can't

> > ask them to take care of me now. It is very hard to accept. I

didn't

> > want to be a burden like my mother and father were. Plus now my

> > sister and I have health problems, My husband had a major heart

> > attack two years ago, works 6 days a week, and my sister now has

a

> > family of her own, and her own marital and medical problems. How

did

> > you people stay from getting depressed and dealing with the fact

of

> > this disease. I have become very emotional and depressed. Any

> > suggestions as to how to deal with this would be greatly

appreciated.

> > Joing some of these mito groups have helped. I feel I have

someone to

> > talk to, since I don't want to of feel I can talk to my family,

> > because of what we had already gone through.

> >

> >

> >

> >

> >

> > 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 and welcome to the group, I have to agree with , RH and

Vivian, there are plenty of things you can do for your mito! Im

sorry your doctor told you to do nothing, it must have been the most

scariest and fustrating moment of your life, and from your post you

have been thru alot. I do have to say what you and your sister

vowed back then might not be the way she feels now, you are her

brother sounds like you would and are there for her still and she

will be there for you, at least tell her and let it be her decision

if she can help or not. She may not physcally be able to help, but

im sure she will be there for you emotionally. My son Matt was born

with mito diagnosed via muscle biopsy they believe Melas with

complex one defect. I am his mother i too have mito, diagnosed via

muscle biopsy, and also believed to have Melas. Matt will undergo a

second biopsy to see if Melas will show up, all blood work and

syptoms point to MELAS. we were hoping they would find the mutation

thru me but they didnt. I hate to have to put Matt through another

biopsy, but the docs can better help us with more specific

diagnoses. when he was diagnosed they said he wouldnt live pass age

3, he is now 9 years old and most dont know he is disabled. When he

was a baby and small child he had high lactic acid, pyruvate, cpk,

global developmental delays which include pdd-autism, adhd, ocd,

odd, severe muscle weakness, seizures, white and gray matter lesion

around the brain, migrain-stoke like episodes, severe gi issue-feeds

via g-tube, bladder incontence, severe tooth decay from medications.

He started special schools from age 18 months old, for speech

therapy he did learn sign language, feeding therapy, physical and

occupational therapy, water therapy and so on. He was put on mito

cocktail which is tailored to his symptoms and thats when things

turned around for him, progression slowed, like i said he is now 9

years old, his adult teeth are coming in perfectly, outgrew

seizures, migrains under control, he can run, jump, climb,he cannot

ride a bike without training wheels yet, he is still incontenant,

and still fed via-g tube,we do have overnight nursing for him still,

he also had nursing on school bus, he was in special need classes

until the 2nd grade where he then became fully included in public

school with IEP individual education plan, and pulled for specials

like therapies, this year we transferred him to private catholic

school he still has an IEP, and is doing very well straight A's and

B's. he is also MH which is malignant hyperthermia, he has exercise

intolerance, and has problems with climate hot and cold, still very

small for his age as he still has failure to thrive issues. He is a

boyscout, loves fishing, loves his community and church, has many

friends, although he still prefers to play alone most of the time.

Like i said the cocktail has changed his life, and unless you really

get to know Matt, you would never know anything was wrong with him

to just look at him, and you'de really have to spend alot of time

with him for his disabilities to be apparent. Again i have adult

onset mito, migrains, breathing issues, gi issues, muscle weakness,

i use a cane at times or scooter to preserve energy, as i am

excersice intolerant, hot and cold intolerant. as you can see my son

and i have alot of symptoms in common and alot that are completely

different, every mito case is origional even in immediate families.

I have two older children ages 23 and 20 and they have mild signs of

mito, not tested yet. Now if anyone should feel like a burden to

family and friends you would think it would be us, but we are not a

burden, and you do find out who your friends really are. 8 months

ago i was diagnosed with lung cancer, i then allowed home health

care hospice to help out here at home. when your ready and need

that type of assistance your doctor and community can help with

that. Even meals on wheels if needed. when i was diagnosed with

cancer my biggest problem was how to tell my children, husband and

parents, i did not want to cause them grieve or pain, but like i

said they are right there for me, just like this support group, This

group has gone beyond the call of friendship, as supporting me with

my mito is one thing, but many have gone out of thier way to help

support me through my ordeal with cancer too. Please i know things

feel grim right now, but dont give up hope, there is plenty of help

for mito, and the docs are learning more and more each day with

research. You can check out the United Mitochondrial Disease

Foundation on line if you like and also the MDA Muscular Dystrophy

Association online too. They offer alot of help also. I forgot to

mention that when i started the cocktail for my mito i seen

improvement in less than a month. Sorry so lenghty, just wanted you

to know you are not alone and there'sthings you can do for your

mito, it takes time and at first ya feel that things will never be

normal again, but believe me it all falls in place and you will

enjoy life again. I do not work because of my mito, im on

disability your doctor can help you with that too if it comes to

that. We are here for you even if you just want to vent let it out

we understand, im sure many here can help you with your questions,

once you get over the shock of this diagnoses. I'd say alot of

folks here know more than most doctors do about mito so youve come

to the right place. welcome home, warm hugs Barb