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Maggie

Terporal arteritis is an autoimmune disorder. Since many people have both,

it is an interesting question. The doctor's don't feel there is a

connection, but also find it interesting.

My mom with mito was diagnosed with temporal arteritis, but not by biopsy.

My dad has temporal arteritis by biopsy. Personally, I believe my mother's

symptoms were due to her mito. She did not know she had it when she was

diagnosed with temporal arteritis. The chance of both a husband and wife

having it is almost impossible according to their doctors.

Have you been diagnosed with this?

laurie

>

> Reply-To:

> Date: Sat, 17 Apr 2004 20:31:52 -0000

> To:

> Subject: temporal arteritis

>

> Is there any relationship between temporal arteritis (vasculitis)

> and mito?

>

> Maggie

>

>

>

> 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.

>

>

>

>

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Guest guest

Thanks Laurie,

I'm asking because my mother is suspected of having this (and I

don't believe they will want to do a biopsy on her because of other

health conditions).

She hasn't been diagnosed with mito - but has CHF, peripheral

neuropathy (unknown cause) and digestion issues (a lot of problems

often seen with mito).

Did they treat your mother with steroids for this? Would it have

made a difference (do you think) if they knew about the mito when

she was diagnosed with arteritis?

Maggie

> Maggie

>

> Terporal arteritis is an autoimmune disorder. Since many people

have both,

> it is an interesting question. The doctor's don't feel there is a

> connection, but also find it interesting.

>

> My mom with mito was diagnosed with temporal arteritis, but not by

biopsy.

> My dad has temporal arteritis by biopsy. Personally, I believe my

mother's

> symptoms were due to her mito. She did not know she had it when

she was

> diagnosed with temporal arteritis. The chance of both a husband

and wife

> having it is almost impossible according to their doctors.

>

> Have you been diagnosed with this?

>

> laurie

>

> > From: " whoewe2002 "

> > Reply-To:

> > Date: Sat, 17 Apr 2004 20:31:52 -0000

> > To:

> > Subject: temporal arteritis

> >

> > Is there any relationship between temporal arteritis (vasculitis)

> > and mito?

> >

> > Maggie

> >

> >

> >

> > 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.

> >

> >

> >

> >

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Maggie

They did treat my mom with steroids for about a year. I think they would

have considered the symptoms as those of mito if they had known.

The biopsy is just a small piece of artery taken from the temple, under

local anaesthetic. It was done in minutes with my dad while he sat in a

chair like in the dentist's office.

My dad has flares, especially when his prednisone is at a low level or he

has tapered off of it.

laurie

>

> Reply-To:

> Date: Sat, 17 Apr 2004 21:43:03 -0000

> To:

> Subject: Re: temporal arteritis

>

> Thanks Laurie,

> I'm asking because my mother is suspected of having this (and I

> don't believe they will want to do a biopsy on her because of other

> health conditions).

>

> She hasn't been diagnosed with mito - but has CHF, peripheral

> neuropathy (unknown cause) and digestion issues (a lot of problems

> often seen with mito).

>

> Did they treat your mother with steroids for this? Would it have

> made a difference (do you think) if they knew about the mito when

> she was diagnosed with arteritis?

>

> Maggie

>

>

>

>> Maggie

>>

>> Terporal arteritis is an autoimmune disorder. Since many people

> have both,

>> it is an interesting question. The doctor's don't feel there is a

>> connection, but also find it interesting.

>>

>> My mom with mito was diagnosed with temporal arteritis, but not by

> biopsy.

>> My dad has temporal arteritis by biopsy. Personally, I believe my

> mother's

>> symptoms were due to her mito. She did not know she had it when

> she was

>> diagnosed with temporal arteritis. The chance of both a husband

> and wife

>> having it is almost impossible according to their doctors.

>>

>> Have you been diagnosed with this?

>>

>> laurie

>>

>>> From: " whoewe2002 "

>>> Reply-To:

>>> Date: Sat, 17 Apr 2004 20:31:52 -0000

>>> To:

>>> Subject: temporal arteritis

>>>

>>> Is there any relationship between temporal arteritis (vasculitis)

>>> and mito?

>>>

>>> Maggie

>>>

>>>

>>>

>>> 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.

>>>

>>>

>>>

>>>

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Guest guest

Maggie,

my sons vasculitis is in the arteries in his brain. they cant treat with

steroids due to his immunedeficiency. He was dioagnosed by MRA's. they have

been

following him since he was three and he is 9 now. the vasculitis has flared

up and down and has moved around to various arteries in the brain.

he is doing fairly well so we just monitor him with MRI/MRA's every year.

hugs,

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Guest guest

That, and more generally arteritis or vasculitis, was one of my

differential diagnoses. I was prescribed to get a cerebral

arteriogram, but the procedure has a risk of stroke even for " normal

people " , and since I had had stroke-like episodes, I was afraid to.

Take care,

RH

> Is there any relationship between temporal arteritis (vasculitis)

> and mito?

>

> Maggie

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Guest guest

RH,

I probably wouldn't do the procedure either given the risk.

Are you being treated for this at all?

Maggie

> > Is there any relationship between temporal arteritis

(vasculitis)

> > and mito?

> >

> > Maggie

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Guest guest

This is interesting because vasculitis was one of the things that was suggested

for me but no testing was done other than MRI's nor was any suggested. Since I

know I deal with something that renders me helpless to equilibrium problems and

I do mean this totally disables me - I'd love to know if there is some type of

treatment.

Alice

Re: temporal arteritis

RH,

I probably wouldn't do the procedure either given the risk.

Are you being treated for this at all?

Maggie

> > Is there any relationship between temporal arteritis

(vasculitis)

> > and mito?

> >

> > Maggie

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.

------------------------------------------------------------------------------

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Alice

The treatment for temporal arteritis and/or polymyogia rhumatica is long

term steroid use. They can be decreased and even eliminated until the next

flare up. My dad could hardly walk while in the hospital and they thought it

must be cancer. When all the scans came back normal, they did the artery

biopsy, started him on steroids and released him. He was able to walk

upright and without pain in just a couple of days. This was many years ago

and he still has flare-ups and usually has to take 2.5 or 5 mg. maintenance

dose.

laurie

>

> Reply-To:

> Date: Tue, 20 Apr 2004 12:15:58 -0600

> To: >

> Subject: Re: Re: temporal arteritis

>

> This is interesting because vasculitis was one of the things that was

> suggested for me but no testing was done other than MRI's nor was any

> suggested. Since I know I deal with something that renders me helpless to

> equilibrium problems and I do mean this totally disables me - I'd love to know

> if there is some type of treatment.

>

> Alice

> Re: temporal arteritis

>

>

> RH,

> I probably wouldn't do the procedure either given the risk.

> Are you being treated for this at all?

>

> Maggie

>

>

>>> Is there any relationship between temporal arteritis

> (vasculitis)

>>> and mito?

>>>

>>> Maggie

>

>

>

> 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.

>

>

>

>

> ------------------------------------------------------------------------------

>

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Guest guest

No, wasn't determined definitely. I think it was suspected because I

get shooting pains in my temple and also have had some weird

inflammatory CBC results.

My current mito cocktail is doing okay by me, long as my kids don't

get too rambunctious on me.

Take care,

RH

> > > Is there any relationship between temporal arteritis

> (vasculitis)

> > > and mito?

> > >

> > > Maggie

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Guest guest

RH

Everyone in my family with mito (now 7) have the shooting pains in the

temple. I also have an elevated sed. rate, probably due to chronic

tendonitis from weakness stressing the tendons.

laurie

>

> Reply-To:

> Date: Wed, 21 Apr 2004 03:02:00 -0000

> To:

> Subject: Re: temporal arteritis

>

> No, wasn't determined definitely. I think it was suspected because I

> get shooting pains in my temple and also have had some weird

> inflammatory CBC results.

>

> My current mito cocktail is doing okay by me, long as my kids don't

> get too rambunctious on me.

>

> Take care,

> RH

>

>

>

>>>> Is there any relationship between temporal arteritis

>> (vasculitis)

>>>> and mito?

>>>>

>>>> Maggie

>

>

>

> 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.

>

>

>

>

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