Re: 2nd daughter diagnosed with autoimmune

[Guest guest]

Hey, all,

Some of you will remember that it was almost a year ago that my daughter,

Amy, was diagnosed with Graves' Disease.

Last week we were stunned to learn that one of our twins, 17, has been

diagnosed with Mixed Connective Tissue Disease. She went in for an ANA test

after being diagnosed with Raynaud's some months ago. At that time, her ANA

titer wasn't too high, but this time it went into the category that caused

our doctor to give the MCTD diagnosis.

Has anyone had any experience with this? We've signed up for another support

group, but wonder if anyone has any suggestions, i.e., what's the next step?

Do we see a specialist or what?

Also, has anyone else had familial autoimmune problems? I'm sure this has

happened with at least some of you and I'd like to hear from you.

I guess this year we get to learn about another autoimmune disease. Sigh.

Amy's Pam

[Guest guest]

Hey, all,

Some of you will remember that it was almost a year ago that my daughter,

Amy, was diagnosed with Graves' Disease.

Last week we were stunned to learn that one of our twins, 17, has been

diagnosed with Mixed Connective Tissue Disease. She went in for an ANA test

after being diagnosed with Raynaud's some months ago. At that time, her ANA

titer wasn't too high, but this time it went into the category that caused

our doctor to give the MCTD diagnosis.

Has anyone had any experience with this? We've signed up for another support

group, but wonder if anyone has any suggestions, i.e., what's the next step?

Do we see a specialist or what?

Also, has anyone else had familial autoimmune problems? I'm sure this has

happened with at least some of you and I'd like to hear from you.

I guess this year we get to learn about another autoimmune disease. Sigh.

Amy's Pam

[Guest guest]

Hey, all,

Some of you will remember that it was almost a year ago that my daughter,

Amy, was diagnosed with Graves' Disease.

Last week we were stunned to learn that one of our twins, 17, has been

diagnosed with Mixed Connective Tissue Disease. She went in for an ANA test

after being diagnosed with Raynaud's some months ago. At that time, her ANA

titer wasn't too high, but this time it went into the category that caused

our doctor to give the MCTD diagnosis.

Has anyone had any experience with this? We've signed up for another support

group, but wonder if anyone has any suggestions, i.e., what's the next step?

Do we see a specialist or what?

Also, has anyone else had familial autoimmune problems? I'm sure this has

happened with at least some of you and I'd like to hear from you.

I guess this year we get to learn about another autoimmune disease. Sigh.

Amy's Pam

[Guest guest]

Hi Pam,

Sorry to hear about your daughter's diagnosis. MCTD is best managed by a

rheumatologist, and as with other autoimmune diseases, symptoms tend to wax

and wane and are worsened by stress. In general, the test for antibodies to

RNP is used to confirm MCTD as the ANA and DNA antibody tests are also

positive in other disorders. Many of the general nutritional guidelines for

GD apply in MCTD. In both disorders, the immune system is weak, which causes

it become ineffective, reacting inappropriately to the body's own antigens. A

nutrient rich diet with antioxidants has been shown to be beneficial. A good

book is Thriving with your Autoimmune Disorder, written by a psychologist

with fibromyalgia. She really offers a wealth of nutritional and

psychological advice. Take care, Elaine

[Guest guest]

Hi Pam,

Sorry to hear about your daughter's diagnosis. MCTD is best managed by a

rheumatologist, and as with other autoimmune diseases, symptoms tend to wax

and wane and are worsened by stress. In general, the test for antibodies to

RNP is used to confirm MCTD as the ANA and DNA antibody tests are also

positive in other disorders. Many of the general nutritional guidelines for

GD apply in MCTD. In both disorders, the immune system is weak, which causes

it become ineffective, reacting inappropriately to the body's own antigens. A

nutrient rich diet with antioxidants has been shown to be beneficial. A good

book is Thriving with your Autoimmune Disorder, written by a psychologist

with fibromyalgia. She really offers a wealth of nutritional and

psychological advice. Take care, Elaine

[Guest guest]

Hi Pam,

Sorry to hear about your daughter's diagnosis. MCTD is best managed by a

rheumatologist, and as with other autoimmune diseases, symptoms tend to wax

and wane and are worsened by stress. In general, the test for antibodies to

RNP is used to confirm MCTD as the ANA and DNA antibody tests are also

positive in other disorders. Many of the general nutritional guidelines for

GD apply in MCTD. In both disorders, the immune system is weak, which causes

it become ineffective, reacting inappropriately to the body's own antigens. A

nutrient rich diet with antioxidants has been shown to be beneficial. A good

book is Thriving with your Autoimmune Disorder, written by a psychologist

with fibromyalgia. She really offers a wealth of nutritional and

psychological advice. Take care, Elaine

[Guest guest]

burbackpack@... wrote:

>

> Also, has anyone else had familial autoimmune problems? I'm sure this has

> happened with at least some of you and I'd like to hear from you.

Alas yes. I think the survey here said over 70% of us have

autoimmune problems in the family, and I wouldn't be surprised

if many of the other 30% just don't know of such problems.

I'm always hesitant to relate my mothers experience of SLE

(Lupus, which is another mixed connective tissue disease

diagnosis), as she died though complications with other

problems, and after receiving a single lung transplant.

However she lived a fulfilling life, part of which was working

actively with the local Lupus support group, with fund raising,

and other events. There I met ladies (almost exclusively ladies)

with very wide variation in severity of symptoms.

For many the disease was a spasmodic problem, only really an

issue during flare-ups and often well controlled by steroids. My

mother, and another member she befriended, suffered far worse

than the other members, her friend having a particular problem

with sunlight.

Whilst I think my mothers case was unusually severe, this is a

disease where the problems and experience of individuals varies

hugely, and it is very hard to say for any individual whether it

will be an inconvenience or something worse.

I would recommend finding the most experienced doctor you can,

as we all know from a relatively common thyroid problem, how

limited many doctors knowledge is. My mothers problems focused

on the lungs, and she was " lucky " to have one of the countries

leading chest consultants, although things were still

misdiagnosed at times.

In the UK Mixed Connective Tissue disorder is frequently used as

the case study for autoimmune disorders in medical schools as it

presents in such a variety of guises. So you tend to find all

doctors here know a little bit, but my mother was quite use to

teaching the nurses and junior doctors around her about her

condition.

Despite the mystery that surround the links between Graves' and

MCTD, I'm quite sure once it is all understood that the links

will be simple and straight forward, hence my interest in the

group in Tulane claiming Lupus and some cases of Graves' are

caused by the same virus, passed mother to child.

Simon