Going in circles / miss my mito friends

[Guest guest]

Hi everyone. Sure do miss you all but I've been trying soooo hard to

get concrete news to finally tell you before I checked back in.

I did get a DX of fibromyalgia recently. I called my husband and

said I'm DX with something. I know many of you probaly have it too,

but the muscle pain got so bad I finally went to a rhum.

As you know I took a hiatus from the group to explore empty sellar

syndrome which I know I have. On this support site many suffer our

symptoms. I found a DR. from one of the members and I paid $500.00

to see her, she's an endochrinoligist. She said all my problems are

from a growth hormone deficenecy so I had a 2 hour blood test that

said I do. She wants me to get shots of GH. My insurane company just

denided it.

I'm not really convinced this is my problem. She said the reason I

have the strokelike episodes is because I don't have enough GH.

This could be true.

Many of my symptoms are fibromyalgia, but I still seem to have the

mito symtoms too.

My symptoms have increased and I have new problems too. My epstein

barr count is up, I have a kidney infection,servere muscle pain,

vision problems, servere stomach distress, servere pain in my

shoulders and loss of strenght in them, etc. I can do very little

without getting very tired so I go out very little.

I do have a new attidude though about being chroniclly ill. I

joined rest ministries, a support site for the chron. ill and the

info and books I read really helped me so much. The church hurt and

loss of friend hurt is ok now. It's a part of being chron. ill. I

socialize when I can and don't sweat it anymore when I can't.

I've also learn how to be in a web support group without causing a

stir. Every group has something and I understand what I'm looking

for and understand how far to go with comments and ideas. It's a

learning thing. Many people don't write and just lurk for this

reason. I'm glad you all really are nice and liked me. I've come

to realize that this is a truly caring group and very smart and

devoted people are here.

If anyone has any thoughts about my complex and confusing going in

circles symptoms, please share.

I hope you didn't forget me,

[Guest guest]

Hi ,

I do not know you, but I can assure you right now that I do like you

already! you are safe with me.

I am interested in this rest ministries site , can you send it to me?

Also, I think many of us have been diagnosed with fibromyalgia before the

real diagnosis came in. the symptoms are so similar, I can understand how

it can get confused tosomeone who has never heard of our disease's.

Hang in there. There is light at the end of the tunnel.

Smiles to you,

Going in circles / miss my mito friends

> Hi everyone. Sure do miss you all but I've been trying soooo hard to

> get concrete news to finally tell you before I checked back in.

>

> I did get a DX of fibromyalgia recently. I called my husband and

> said I'm DX with something. I know many of you probaly have it too,

> but the muscle pain got so bad I finally went to a rhum.

>

> As you know I took a hiatus from the group to explore empty sellar

> syndrome which I know I have. On this support site many suffer our

> symptoms. I found a DR. from one of the members and I paid $500.00

> to see her, she's an endochrinoligist. She said all my problems are

> from a growth hormone deficenecy so I had a 2 hour blood test that

> said I do. She wants me to get shots of GH. My insurane company just

> denided it.

>

> I'm not really convinced this is my problem. She said the reason I

> have the strokelike episodes is because I don't have enough GH.

> This could be true.

>

> Many of my symptoms are fibromyalgia, but I still seem to have the

> mito symtoms too.

>

> My symptoms have increased and I have new problems too. My epstein

> barr count is up, I have a kidney infection,servere muscle pain,

> vision problems, servere stomach distress, servere pain in my

> shoulders and loss of strenght in them, etc. I can do very little

> without getting very tired so I go out very little.

>

> I do have a new attidude though about being chroniclly ill. I

> joined rest ministries, a support site for the chron. ill and the

> info and books I read really helped me so much. The church hurt and

> loss of friend hurt is ok now. It's a part of being chron. ill. I

> socialize when I can and don't sweat it anymore when I can't.

>

> I've also learn how to be in a web support group without causing a

> stir. Every group has something and I understand what I'm looking

> for and understand how far to go with comments and ideas. It's a

> learning thing. Many people don't write and just lurk for this

> reason. I'm glad you all really are nice and liked me. I've come

> to realize that this is a truly caring group and very smart and

> devoted people are here.

>

> If anyone has any thoughts about my complex and confusing going in

> circles symptoms, please share.

>

> I hope you didn't forget me,

>

>

>

>

>

>

> 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]

- Of course we didn't forget you. Welcome back. I'm sorry your symptoms

haven't lessened and that insurance hasn't cooperated when we all know they

should but it's just one of those things we seem to all get used to.

I'm not surprised that you have a diagnosis of Fybro. It's one of the many that

are given to Mito patients and I guess we would appear to have it in many cases.

I'm not sure about your other diagnosis. You said an endocrinolgist gave you

this. They are usually very good but of course - not all of them are.

It sounds as if you have found a good circle of friends on the internet and

found some postitive support beyond Mitoldies. This is a good thing and I'm

happy that you've been able to do that. It seems that we just have to earnestly

search for support for our needs on the internet and most of the time we can

find it. Good for you.

It was nice to hear from you.

Alice

[Guest guest]

It is good to hear from you. I have missed you too.

I don't know if you have heard this or not, but several children and teens

that I am aware of have benefited from human growth hormone. Mito can

attack the endocrine system, the same way as it attacks other organ systems.

It is so hard to put everything into something that doesn't make us pieces

of bodies but a whole one (even if a poorly functioning one).

laurie

>

> Reply-To:

> Date: Thu, 01 Jul 2004 20:25:21 -0000

> To:

> Subject: Going in circles / miss my mito friends

>

> Hi everyone. Sure do miss you all but I've been trying soooo hard to

> get concrete news to finally tell you before I checked back in.

>

> I did get a DX of fibromyalgia recently. I called my husband and

> said I'm DX with something. I know many of you probaly have it too,

> but the muscle pain got so bad I finally went to a rhum.

>

> As you know I took a hiatus from the group to explore empty sellar

> syndrome which I know I have. On this support site many suffer our

> symptoms. I found a DR. from one of the members and I paid $500.00

> to see her, she's an endochrinoligist. She said all my problems are

> from a growth hormone deficenecy so I had a 2 hour blood test that

> said I do. She wants me to get shots of GH. My insurane company just

> denided it.

>

> I'm not really convinced this is my problem. She said the reason I

> have the strokelike episodes is because I don't have enough GH.

> This could be true.

>

> Many of my symptoms are fibromyalgia, but I still seem to have the

> mito symtoms too.

>

> My symptoms have increased and I have new problems too. My epstein

> barr count is up, I have a kidney infection,servere muscle pain,

> vision problems, servere stomach distress, servere pain in my

> shoulders and loss of strenght in them, etc. I can do very little

> without getting very tired so I go out very little.

>

> I do have a new attidude though about being chroniclly ill. I

> joined rest ministries, a support site for the chron. ill and the

> info and books I read really helped me so much. The church hurt and

> loss of friend hurt is ok now. It's a part of being chron. ill. I

> socialize when I can and don't sweat it anymore when I can't.

>

> I've also learn how to be in a web support group without causing a

> stir. Every group has something and I understand what I'm looking

> for and understand how far to go with comments and ideas. It's a

> learning thing. Many people don't write and just lurk for this

> reason. I'm glad you all really are nice and liked me. I've come

> to realize that this is a truly caring group and very smart and

> devoted people are here.

>

> If anyone has any thoughts about my complex and confusing going in

> circles symptoms, please share.

>

> I hope you didn't forget me,

>

>

>

>

>

> 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 ,

No we didn't forget you....I've been inactive for several months but still think

of and pray for all of my mito friends. Glad you are back around. Dr. Kessler

at Ohio State said that one of his colleagues is convinced that fibromyalgia is

a mito problem and would like to prove it. So hang in there and stick

around....the more the merrier:) This is such a wonderful group of folks...just

a bad way to have to meet.

I'm still taking care of Dewayne and farming along with our little boy Spencer.

Oh yeah, I have a full time job too...that pays for our farming. Haha

Take care, Lynda R.

Going in circles / miss my mito friends

Hi everyone. Sure do miss you all but I've been trying soooo hard to

get concrete news to finally tell you before I checked back in.

I did get a DX of fibromyalgia recently. I called my husband and

said I'm DX with something. I know many of you probaly have it too,

but the muscle pain got so bad I finally went to a rhum.

As you know I took a hiatus from the group to explore empty sellar

syndrome which I know I have. On this support site many suffer our

symptoms. I found a DR. from one of the members and I paid $500.00

to see her, she's an endochrinoligist. She said all my problems are

from a growth hormone deficenecy so I had a 2 hour blood test that

said I do. She wants me to get shots of GH. My insurane company just

denided it.

I'm not really convinced this is my problem. She said the reason I

have the strokelike episodes is because I don't have enough GH.

This could be true.

Many of my symptoms are fibromyalgia, but I still seem to have the

mito symtoms too.

My symptoms have increased and I have new problems too. My epstein

barr count is up, I have a kidney infection,servere muscle pain,

vision problems, servere stomach distress, servere pain in my

shoulders and loss of strenght in them, etc. I can do very little

without getting very tired so I go out very little.

I do have a new attidude though about being chroniclly ill. I

joined rest ministries, a support site for the chron. ill and the

info and books I read really helped me so much. The church hurt and

loss of friend hurt is ok now. It's a part of being chron. ill. I

socialize when I can and don't sweat it anymore when I can't.

I've also learn how to be in a web support group without causing a

stir. Every group has something and I understand what I'm looking

for and understand how far to go with comments and ideas. It's a

learning thing. Many people don't write and just lurk for this

reason. I'm glad you all really are nice and liked me. I've come

to realize that this is a truly caring group and very smart and

devoted people are here.

If anyone has any thoughts about my complex and confusing going in

circles symptoms, please share.

I hope you didn't forget me,

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 Lynda,

You know that does sound like fibro and mito could be one in the

same. Thank you for the prayers.

Wow a farm. I'm not a outdoor person or animal lover. But more

power to ya'. I love to eat the products of farming :-))

-- In , " Lynda and Dewayne Rose "

wrote:

> Hi ,

> No we didn't forget you....I've been inactive for several months

but still think of and pray for all of my mito friends. Glad you

are back around. Dr. Kessler at Ohio State said that one of his

colleagues is convinced that fibromyalgia is a mito problem and

would like to prove it. So hang in there and stick around....the

more the merrier:) This is such a wonderful group of folks...just a

bad way to have to meet.

> I'm still taking care of Dewayne and farming along with our little

boy Spencer. Oh yeah, I have a full time job too...that pays for

our farming. Haha

> Take care, Lynda R.

> Going in circles / miss my mito friends

>

>

> Hi everyone. Sure do miss you all but I've been trying soooo

hard to

> get concrete news to finally tell you before I checked back in.

>

> I did get a DX of fibromyalgia recently. I called my husband

and

> said I'm DX with something. I know many of you probaly have it

too,

> but the muscle pain got so bad I finally went to a rhum.

>

> As you know I took a hiatus from the group to explore empty

sellar

> syndrome which I know I have. On this support site many suffer

our

> symptoms. I found a DR. from one of the members and I paid

$500.00

> to see her, she's an endochrinoligist. She said all my problems

are

> from a growth hormone deficenecy so I had a 2 hour blood test

that

> said I do. She wants me to get shots of GH. My insurane company

just

> denided it.

>

> I'm not really convinced this is my problem. She said the

reason I

> have the strokelike episodes is because I don't have enough GH.

> This could be true.

>

> Many of my symptoms are fibromyalgia, but I still seem to have

the

> mito symtoms too.

>

> My symptoms have increased and I have new problems too. My

epstein

> barr count is up, I have a kidney infection,servere muscle pain,

> vision problems, servere stomach distress, servere pain in my

> shoulders and loss of strenght in them, etc. I can do very

little

> without getting very tired so I go out very little.

>

> I do have a new attidude though about being chroniclly ill. I

> joined rest ministries, a support site for the chron. ill and

the

> info and books I read really helped me so much. The church hurt

and

> loss of friend hurt is ok now. It's a part of being chron. ill.

I

> socialize when I can and don't sweat it anymore when I can't.

>

> I've also learn how to be in a web support group without causing

a

> stir. Every group has something and I understand what I'm

looking

> for and understand how far to go with comments and ideas. It's

a

> learning thing. Many people don't write and just lurk for this

> reason. I'm glad you all really are nice and liked me. I've

come

> to realize that this is a truly caring group and very smart and

> devoted people are here.

>

> If anyone has any thoughts about my complex and confusing going

in

> circles symptoms, please share.

>

> I hope you didn't forget me,

>

>

>

>

>

> 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 been going in circles too, I am still carrying out

various tests suggested by the mito doc I saw in Novemeber, but this

included seeing a new neurologist, who suggests I don't look like a

mito patient and that I have problems in message transmission at the

neuro muscular junction.(test results were abnormal, but only

suggestive of some kind of myasthenic syndrome) i will continue with

the mito docs suggestions, and do what treatments are recommended for

the mito( CoQ and aarnitine, which really seem to help- meso therapy

sounds interesting) and just try and take care of myself and my

various individual problems!I think this is my plan to " go on " with. I

too have been away from the group and it's nice to be back!, Celia

-- In , " tanya2727 " wrote:

> Hi everyone. Sure do miss you all but I've been trying soooo hard to

> get concrete news to finally tell you before I checked back in.

>

> I did get a DX of fibromyalgia recently. I called my husband and

> said I'm DX with something. I know many of you probaly have it too,

> but the muscle pain got so bad I finally went to a rhum.

>

> As you know I took a hiatus from the group to explore empty sellar

> syndrome which I know I have. On this support site many suffer our

> symptoms. I found a DR. from one of the members and I paid $500.00

> to see her, she's an endochrinoligist. She said all my problems are

> from a growth hormone deficenecy so I had a 2 hour blood test that

> said I do. She wants me to get shots of GH. My insurane company just

> denided it.

>

> I'm not really convinced this is my problem. She said the reason I

> have the strokelike episodes is because I don't have enough GH.

> This could be true.

>

> Many of my symptoms are fibromyalgia, but I still seem to have the

> mito symtoms too.

>

> My symptoms have increased and I have new problems too. My epstein

> barr count is up, I have a kidney infection,servere muscle pain,

> vision problems, servere stomach distress, servere pain in my

> shoulders and loss of strenght in them, etc. I can do very little

> without getting very tired so I go out very little.

>

> I do have a new attidude though about being chroniclly ill. I

> joined rest ministries, a support site for the chron. ill and the

> info and books I read really helped me so much. The church hurt and

> loss of friend hurt is ok now. It's a part of being chron. ill. I

> socialize when I can and don't sweat it anymore when I can't.

>

> I've also learn how to be in a web support group without causing a

> stir. Every group has something and I understand what I'm looking

> for and understand how far to go with comments and ideas. It's a

> learning thing. Many people don't write and just lurk for this

> reason. I'm glad you all really are nice and liked me. I've come

> to realize that this is a truly caring group and very smart and

> devoted people are here.

>

> If anyone has any thoughts about my complex and confusing going in

> circles symptoms, please share.

>

> I hope you didn't forget me,

>

>

[Guest guest]

Hi ,

A lot of what you say sounds familiar...

> Hi everyone. Sure do miss you all but I've been trying soooo hard

> to get concrete news to finally tell you before I checked back in.

> I did get a DX of fibromyalgia recently. I called my husband and

> said I'm DX with something. I know many of you probaly have it

> too,

> but the muscle pain got so bad I finally went to a rhum.

Yes, I have a fibromyalgia diagnosis too, but it's more of a side

note than an " okay, so now let's do this " ...

> As you know I took a hiatus from the group to explore empty sellar

> syndrome which I know I have.

I read a bit about this:

http://www.ninds.nih.gov/health_and_medical/disorders/emptysella.htm

It is interesting, in that it may be related to a smaller than normal

pituitary gland. Pituitary gland size increases in pregnancy, and I

am much less symptomatic when pregnant. Of course no doctor can

explain why, the most common guess is due to the increased blood

volume and flow rate.

> On this support site many suffer our

> symptoms. I found a DR. from one of the members and I paid $500.00

> to see her, she's an endochrinoligist. She said all my problems

> are from a growth hormone deficenecy so I had a 2 hour blood test

> that said I do. She wants me to get shots of GH. My insurane

> company just denided it.

Interestingly, there is some research that myasthenia gravis (MG) is

related to a growth hormone deficiency or " immunity " . I was

previously diagnosed with MG, but they " disproved " it.

> I'm not really convinced this is my problem. She said the reason I

> have the strokelike episodes is because I don't have enough GH.

> This could be true.

Not enough GH can mean pretty much everything doesn't work right, so

similar to a direct mitochondrial problem...

I have a cousin who is a little person (about 3'6 " ), and she

supposedly has a " rare " form of dwarfism, but I haven't gotten

details from her as to whether the mitochondria might be involved.

> Many of my symptoms are fibromyalgia, but I still seem to have the

> mito symtoms too.

As I mentioned, I have both. I find the fibromyalgia type symptoms

respond to taking methyl sulfonyl methane, especially the kind that

includes Molybdenum (an essential mineral). I went to the emergency

room with severe pain once, and the narcotics didn't help, finally I

found methyl sulfonyl methane (with molybdenum) and I have a good

amount of relief from pain.

> My symptoms have increased and I have new problems too. My epstein

> barr count is up,

I haven't had repeats of mine, but it was quite high (the inactive,

previous infection kind, not the active kind).

> I have a kidney infection,servere muscle pain,

> vision problems, servere stomach distress, servere pain in my

> shoulders and loss of strenght in them, etc. I can do very little

> without getting very tired so I go out very little.

Have you tried NADH (Enadalert brand)? They have sublingual tablets,

and NADH is another part of the workings of the mitochondrial.

Between taking NADH and being in ketosis from a high protein, high

fat, low carb diet, I'm feeling mostly okay. But I still have to be

careful.

> I do have a new attidude though about being chroniclly ill. I

> joined rest ministries, a support site for the chron. ill and the

> info and books I read really helped me so much. The church hurt

> and loss of friend hurt is ok now. It's a part of being chron. ill.

> I socialize when I can and don't sweat it anymore when I can't.

Lucky me, I'm antisocial. I have a very supportive close family, so

that helps. They called me a hypochondriac when I was younger, but

the few I am still close to are really great helps.

> I've also learn how to be in a web support group without causing a

> stir. Every group has something and I understand what I'm looking

> for and understand how far to go with comments and ideas. It's a

> learning thing. Many people don't write and just lurk for this

> reason. I'm glad you all really are nice and liked me. I've come

> to realize that this is a truly caring group and very smart and

> devoted people are here.

Don't let people make you feel bad. We're all learning, and I

challenge anyone to always say and do the right thing. " It's better

to have a plan, even a bad plan, than no plan at all. "

> If anyone has any thoughts about my complex and confusing going in

> circles symptoms, please share.

Since I am someone with some concrete answers, I'll share a bit.

When my labs came back and showed: definite mitochondrial defects

and specifically lack of activity of Complex I (zero, nada, zilch),

where normal my age was 100 and normal over 50 years old was 100. I

was shocked I wasn't dead already, and figured my body was somehow

compensating.

My 3 year old son is going through the process of diagnosis now.

> I hope you didn't forget me,

>

No, we didn't We all go through stages of dealing with this, I

think if you could work with someone in terms of trying different

aspects of the mito cocktail, you might find some relief. Then

again, I had some severe side effects from trying a few things on

the " mito cocktail " list, so maybe you could go to a MDA clinic to

see a mito specialist to guide you.

Good to hear from you again, !

Take care,

RH