Re: bloodshot eyes

August 28, 2003

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinion

on his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairly

often for the last few months.

My daughter has a similar problem in that she has blood shot eyes a lot and it is getting worse over the past several months. I have just assumed it is related to her mito as she has had a lot of progression since last April and the blood shot thing has just gotten worse too.

On the issues of the glasses. I have always noticed her eyes seem to have problems with focusing and crossing at times. She saw several docs who only found that she has some visual field loss and nerve palsy from one of her strokes. Lzst March after her fundo she woke up with totally crossed eyes and they finally were able to see that when she is metabolically compromised her eyes grow increasingly worse. She is in glasses now and that seems to help a lot. You can still see the difference between a good mito day and a bad, but the glasses seem to help her out quite a lot. She is actually in bifocals partially due to visual issues from her stroke.

Don't know if this helps, but just thought I'd share.

Holly

August 28, 2003

,

My son (age 2) started having bloodshot eyes last year. When I took him to the doctor we found out that he couldn't blink and had corneal anesthesia (his eyes had no feeling). You don't want to know how we proved this -- let's just say it's not something to try at home. Any way, I use an over the counter eye medication that has really helped -- it's Puralube. CVS carries it. I use it 2 to 3 times a day. It's as natural as tears and you don't need a script for it. -- You might want to take a few pictures on bad days -- just so the doctor knows. I took pictures of sleeping because he didn't close his right at eye -- it's the only way I could let the doctor know exactly what I was talking about. A picture says a thousand words.

Sue Ann

bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 28, 2003

, do you mean completely bloodshot or areas that seem to have a center?

i would think that in this season completely bloodshot could be allergy

areas in our sclera

doctors always suspect that our pressure must be high in the eyes

so far we have tested normal, just another area that gets checked frequently

but they have connected the redness of sclera (again, our has been like

spots with spider legs) to pressure, like in glaucoma

cara

bloodshot eyes

> I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second

opinion

> on his glasses for crossed eyes. He's had pretty bad blood-shot eyes

fairly

> often for the last few months. When I asked my daughter what on earth is

> wrong, why are they doing that, she says he keeps getting hit or bumping

> them like when the kids jump on the trampoline or the kids roughhouse. I

> told her that doesn't make sense as they didn't do that before (hardly

ever)

> and they don't bump THAT hard and it doesn't happen to the other kids.

>

> The eye Dr. wanted to know what kind of auto-immune disorder he has. I

said

> none I know of. She said usually that is something you see with that. I

> don't understand that at all, have no idea what she is talking about. Does

> anyone on here know? I know the subject of that stuff from strep has come

up

> in our family, but we never got any definitive answers on it. Don't really

> know how to test.

>

> I tried telling them about the possible mito. They said they see only a

> little in-point nystagmus. I tried telling them that it varies, sometimes

> being really bad. That day it just happened to be good.

>

> I hate that about this disorder! It varies so much between individuals and

> even within the person over time that it is hard for the medical people to

> take us seriously. I'm sure it seems very " mental-hypochondriac " to them,

> but that really IS what happens and when a symptom is BAD it can be life

> threatening so it's scary when you have a whole family of people who AT

> TIMES has one crisis or another and no one pays attention or takes us

> seriously or will try to figure it out.

>

> It's bad when you have ONE person like that too, I know. I guess I mean

I'm

> so tired being one person trying to take care of so many like this and

> people outside and many inside the family not understanding even about

> themselves. When it's a crisis they want help, when it gets better or that

> crisis is fixed then they want to deny any serious problem. I want to fix

> things so life can go smoother on a regular basis. I see things as a whole

> and not just separate disconnected parts. It feels like I'm juggling and

> someone is trying to trip me and every so often they even put something

> slippery under my feet!

> Sure you all know what I mean. Frustrating and also scary.

>

> I also told the eye Dr.s about how my sister and I and my daughter have

> times when suddenly we can see perfect-like the out of focus camera

focusing

> in. I told them I know for one thing that part of it is muscles that

> suddenly are strong because I can feel the eye being pulled in, but they

> look at me like, " RIGHT, lady (what a whacko) " . I don't know why the folic

> acid IVs made the colors so deep and the edges of things so distinct. I

also

> don't know why some drugs like the cogentin made my space perception

> different (and other things normalize). I'm not an eye expert.

>

> But so many things make sense to me when we use logic, why can't other

> people just use some and I would think at least some other people would be

> interested and curious to learn new things, but they're not. If you don't

> fit in the little square box then don't bother.

>

> Just where are these medical researchers who find new things? Where are

the

> people who write the reports talking about people with milder cases or odd

> symptoms and those who say some types of mito affect the nervous system

and

> the brain (with " mental? symptoms? I thought they all pretty much agreed

now

> that ADHD IS mito, but Dr. Buist told me he never heard that! I thought

Dr.

> Bruce Cohen was thinking this years ago and even interested in proving it?

I

> thought they pretty much agreed that Alzheimer's, Parkinson's, and a

family

> with a lot of cancer's were mito. Yet when I tell them that is my family,

> they say that has nothing to do with it!

>

> It's like they tell us to make sure and report if a first degree relative

> had breast or ovarian cancer, but when I do I get told it's not important!

> So why do they even ask us those questions?

>

> Why when you even provide medical journal articles are you treated like

they

> just don't want to be bothered? I've tried convincing the Dr.s that the

> brain is a physical part of the body and " mental " IS physical and the body

> and brain are connected. I've also tried to convince them that a person is

> just as seriously ill and just as dead of suicide as they are of any other

> severe symptom of mito (or any other metabolic illness). It does NO good

to

> sit in psychotherapy for a problem that stems from a metabolic disorder

just

> because it affects the nervous system/brain than it does to go sit there

for

> a metabolic problem that affects the heart or the muscles. DA! GET A

CLUE!!

>

> Thanks to God and God alone I've been able for myself and my family to

> survive this sort of maltreatment in spite of the medical field, but I

know

> many others have not. I have been able to find the right medicines,

> nutrients, diet help, environmental knowledge, etc. to function well

enough

> to keep going and keep searching.

>

> I'll step off my soapbox. It's been a long day school shopping, lots of

> stress, guess I had to drain it somehow! I sat down to ask about the

> bloodshot eyes

> Scoggins

>

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

>

August 28, 2003

Hello ,

My daughter also has bloodshot eyes. It get especially worse when she is overheated or out in the sun. She also has poor vision and focusing issues. I always just chalked up the bloodshot eyes as one of her symptoms of heat and sun intolerance. Maybe there is more to it.

Randee Bates mom to age 6 BRR syndrome, muscle carnitine deficiency

-- bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 28, 2003

Sue Ann, i think you mean that oneof 's eyes did not close at night? do you mean at all or only not completely? used to do this when he was younger, he may still now, I'll have to check because by now it would seem norm to me. I also have been told I keep one eye open a wee bit when asleep. One of the first symptoms had was that he would cover his right eye suddenly like it was in pain. He still rubs his eyes ALOT and his vision is great. I used to connect it to migraines (but those have been so much better, plus his eyes are not as dilated as eyes can be - since carnitine).

I read that not closing one eye completely while asleep can be an indicator for muscular dystrophy, so it would be explained in mito, too, wouldn't it?

Thanks for mentioning those drops, I am going to try to find some. It does not sound like it is anything that could hurt, in case dry eyes is not really 's problem. I'm pretty sure it's not allergy as there is no swelling or mucus or itching.

His father suffers from dry eyes, couldnot wear contacts due to it, and this spring when got some little thing in his eye - about twice the size of the period on the keyboard - it got stuck right away.

Not sure if we have mentioned it before on this list, but it was talked about on some list I am on. 's sclera was blue, really blue for about two years - from age of 2 til 4. Never figured that out. Were 's eyes ever like that?

cara

bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 28, 2003

Dear ,

You don'tknow me. My daughter Samya died at age 8 DEc 10, 2002 of Leigh synd, a form of Mito. I read your frustrated e-mail, and I just want you to know you are not out of your mind. I can relate to everything you said, and it is all correct. My daughter had many symptoms, but the doctors always gave reasons for them, and never connected them together cominf from her mito. Of course, the also never considered mto. She had ADD, and also would get blood shot eyes by 6 pm every night. Who gets that tired by 6 pm I used to think. Well, now I know why and all the seemingly unrelated symptoms she had now make sense. Mu daughter website is synthpop.netherverse.com/mesh

Life is frustrating, family does not understand and this disease is very confusing and disgusting. I hear you and now you got me venting too! Good LUck

Suhad Haddad

Mom to 2 mito girls (Samya in heaven and Leanna on earth)

August 28, 2003

Blue eyes? There is a medical condition for this -- I will have to go back through 's files. never had blue eyes but I do remember reading about it.

's right eye only closes half way at night -- it's really weird to see the white of his eye when he's sleeping. was born with facial palsy. His entire right side droops. It's hard to see now unless he is sleeping.

The Puralube is an ointment not a drop. The ointment stays in the eye longer.

Sue Ann

bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 28, 2003

You know I have had the same eye issue (out of focus-zoom in) and some doctors believed me and others didn't. I understand how you feel and how frustrating it can be when the doctors can't find the reasons for things so they just choose not to believe. As for the sensitive eye issue, I also have a 9 year old son, Isaac, who seems to get poked all the time and constantly has problems with heis eyes. Sounds like it could be a Mito complication "soft sign." Hmmmm Darla: mommy to Asenath bloodshot eyes I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes Scoggins

August 29, 2003

,

Miranda has had numerous bouts of what the Dr kept calling Pink Eye. It was to the point of being ridiculous. She was endlessly being sent home from school and everything because of it. Her Dr said he wanted her to be seen by a Rhumatologist. I really didn't see the connection. Anyway, the appointment was being rescheduled over and over again because of the condition Mirnda was in while in the hospital from April through July. Finally she saw the Rhumatologist a week ago. He said there are several disorders that involve bloodshot eyes that are auto immune. I am sorry I don't remember all the names but he drew a TON of blood and said he wanted her back in a month. I do have the list of labs that were done if that is of any help to you. I will let you know what I find out.

-- bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 29, 2003

,

I would like the list of labs done if you can give me that information. I think it would be helpful. And I would like to know what they say about Miranda when they tell you. I'll share all that everyone has told me with my daughter. MAYBE she'll listen. I'll pray before I talk to her about this. She is usually such an ostrich-according to her nothing is ever wrong with anyone, but esp.. her or her kids. Although when she had to deal with her own sons without meds she came running back saying she understood why dad and I had them on them! (That's the 2 we were raising. Ty who is 13 is still with us-kind of, since they live next door now he is back and forth all the time. And Kody moved back in with them full time last year. I think her hardest issues with him have been the extreme constipation and the rashes. He has one now that is like alligator skin and nothing is helping. He refuses to apply some cream the Dr. gave him though.)

This list never ceases to amaze me for the help everyone gives out!

bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 31, 2003

These are the tests that were run.....

Ferritin......I was told chronic anemia is a symptom of some disorder

Sedimentation rate.....shows inflamation or something to do with infection

CRP Quantitave Rate...no idea what this is

Fibrogen Level...no idea

Transferrin...no idea

Complement C3....no idea

HLA B27 Antigen....no idea

Retic panel....no idea

Iron......not sure here either but Miranda is always anemic with a hemoglobin as low at 7 but presently at 9.8

I hope this makes some sense to someone and can help.

-- bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 31, 2003

These are the tests that were run.....

Ferritin......I was told chronic anemia is a symptom of some disorder

Sedimentation rate.....shows inflamation or something to do with infection

CRP Quantitave Rate...no idea what this is

Fibrogen Level...no idea

Transferrin...no idea

Complement C3....no idea

HLA B27 Antigen....no idea

Retic panel....no idea

Iron......not sure here either but Miranda is always anemic with a hemoglobin as low at 7 but presently at 9.8

I hope this makes some sense to someone and can help.

-- bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 31, 2003

These are the tests that were run.....

Ferritin......I was told chronic anemia is a symptom of some disorder

Sedimentation rate.....shows inflamation or something to do with infection

CRP Quantitave Rate...no idea what this is

Fibrogen Level...no idea

Transferrin...no idea

Complement C3....no idea

HLA B27 Antigen....no idea

Retic panel....no idea

Iron......not sure here either but Miranda is always anemic with a hemoglobin as low at 7 but presently at 9.8

I hope this makes some sense to someone and can help.

-- bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 31, 2003

These are the tests that were run.....

Ferritin......I was told chronic anemia is a symptom of some disorder

Sedimentation rate.....shows inflamation or something to do with infection

CRP Quantitave Rate...no idea what this is

Fibrogen Level...no idea

Transferrin...no idea

Complement C3....no idea

HLA B27 Antigen....no idea

Retic panel....no idea

Iron......not sure here either but Miranda is always anemic with a hemoglobin as low at 7 but presently at 9.8

I hope this makes some sense to someone and can help.

-- bloodshot eyes

I took Jordan (age 9-grandson) to the eye Dr. yesterday for a second opinionon his glasses for crossed eyes. He's had pretty bad blood-shot eyes fairlyoften for the last few months. When I asked my daughter what on earth iswrong, why are they doing that, she says he keeps getting hit or bumpingthem like when the kids jump on the trampoline or the kids roughhouse. Itold her that doesn't make sense as they didn't do that before (hardly ever)and they don't bump THAT hard and it doesn't happen to the other kids.The eye Dr. wanted to know what kind of auto-immune disorder he has. I saidnone I know of. She said usually that is something you see with that. Idon't understand that at all, have no idea what she is talking about. Doesanyone on here know? I know the subject of that stuff from strep has come upin our family, but we never got any definitive answers on it. Don't reallyknow how to test.I tried telling them about the possible mito. They said they see only alittle in-point nystagmus. I tried telling them that it varies, sometimesbeing really bad. That day it just happened to be good.I hate that about this disorder! It varies so much between individuals andeven within the person over time that it is hard for the medical people totake us seriously. I'm sure it seems very "mental-hypochondriac" to them,but that really IS what happens and when a symptom is BAD it can be lifethreatening so it's scary when you have a whole family of people who ATTIMES has one crisis or another and no one pays attention or takes usseriously or will try to figure it out.It's bad when you have ONE person like that too, I know. I guess I mean I'mso tired being one person trying to take care of so many like this andpeople outside and many inside the family not understanding even aboutthemselves. When it's a crisis they want help, when it gets better or thatcrisis is fixed then they want to deny any serious problem. I want to fixthings so life can go smoother on a regular basis. I see things as a wholeand not just separate disconnected parts. It feels like I'm juggling andsomeone is trying to trip me and every so often they even put somethingslippery under my feet!Sure you all know what I mean. Frustrating and also scary.I also told the eye Dr.s about how my sister and I and my daughter havetimes when suddenly we can see perfect-like the out of focus camera focusingin. I told them I know for one thing that part of it is muscles thatsuddenly are strong because I can feel the eye being pulled in, but theylook at me like, "RIGHT, lady (what a whacko)". I don't know why the folicacid IVs made the colors so deep and the edges of things so distinct. I alsodon't know why some drugs like the cogentin made my space perceptiondifferent (and other things normalize). I'm not an eye expert.But so many things make sense to me when we use logic, why can't otherpeople just use some and I would think at least some other people would beinterested and curious to learn new things, but they're not. If you don'tfit in the little square box then don't bother.Just where are these medical researchers who find new things? Where are thepeople who write the reports talking about people with milder cases or oddsymptoms and those who say some types of mito affect the nervous system andthe brain (with "mental? symptoms? I thought they all pretty much agreed nowthat ADHD IS mito, but Dr. Buist told me he never heard that! I thought Dr.Bruce Cohen was thinking this years ago and even interested in proving it? Ithought they pretty much agreed that Alzheimer's, Parkinson's, and a familywith a lot of cancer's were mito. Yet when I tell them that is my family,they say that has nothing to do with it!It's like they tell us to make sure and report if a first degree relativehad breast or ovarian cancer, but when I do I get told it's not important!So why do they even ask us those questions?Why when you even provide medical journal articles are you treated like theyjust don't want to be bothered? I've tried convincing the Dr.s that thebrain is a physical part of the body and "mental" IS physical and the bodyand brain are connected. I've also tried to convince them that a person isjust as seriously ill and just as dead of suicide as they are of any othersevere symptom of mito (or any other metabolic illness). It does NO good tosit in psychotherapy for a problem that stems from a metabolic disorder justbecause it affects the nervous system/brain than it does to go sit there fora metabolic problem that affects the heart or the muscles. DA! GET A CLUE!!Thanks to God and God alone I've been able for myself and my family tosurvive this sort of maltreatment in spite of the medical field, but I knowmany others have not. I have been able to find the right medicines,nutrients, diet help, environmental knowledge, etc. to function well enoughto keep going and keep searching.I'll step off my soapbox. It's been a long day school shopping, lots ofstress, guess I had to drain it somehow! I sat down to ask about thebloodshot eyes ScogginsPlease contact mito-owner with any problems or questions.

August 31, 2003

>

> Ferritin*** Iron levels, to see if to high or low

> Sedimentation rate.....

> CRP Quantitave Rate...no idea what this is

> Fibrogen Level...no idea

> Transferrin...part of the iron study

> Complement C3....no idea

> HLA B27 Antigen....no idea

> Retic panel....has to do with the production of red blood

cells/these numbers can indicate whethter her body is procing them or

not ( rarely has a normal retic count and recieves transfusions

about every 5 wks.)

> Iron...if low can cause iron def. anemia

>

Has Miranda ever had to have a blood transfusion? Has she ever been

treated with iron to help elevate her production of red blood cells?

Dawn

>

>.

August 31, 2003

No, Miranda has never had a transfusion. This is mosty based on religious convictions. Her Dr said he was ok with letting it go as long as she was not symptomatic ( breathing problems, ect)