Re: I found out something new today.

[Guest guest]

In a message dated 3/22/02 9:30:36 PM Pacific Standard Time,

mgiordano@... writes:

<< http://www.acurian.com/link.jsp?cd=FEATURE & id=0900744b8001851b >>

Carol, I finally got this to work, but it took me a long time. LOL I copied

it and sent it to the group. This is really interesting. Gosh, I hope he

can give us some hope. Wouldn't this be wonderful. I will surely ask him

about this and how it is coming along when I see him next month.

I too was treated for ovarian cysts and endometriosis for MANY years and

ended up with a hysterectomy in 1993. Seems like a lot of my problems

started then too. I also had 4 pregnancy's and 3 births. My 2 daughters

have endometriosis and my middle one had a miscarriage in Dec. Hummmmm!!!

She also shows signs of autoimmune disease but you know how it is trying to

convince drs. " She is too young "

I hope we get some answers soon. I just feel that this year will be a great

one for research in this area.

Thanks again for sharing this with us.

hugs

[Guest guest]

Lucy, my vertebras are fused too. Also have lipomas. I wonder if any of

this is connected to RP.

I think on your next medic alert bracelet, you should move Rp to the

bracelet. LOL

Miss talking to you Lucy. I can never catch you on line.

know i'm thinking of you.

hugs

[Guest guest]

In a message dated 3/22/02 11:27:08 PM Pacific Standard Time,

L10@... writes:

<<

Isn't that wild! What is with this disease?

>>

Lucy, I bet if we just never give up, we will find out one thing that we all

have in common. LOL Although I hope I don't get your hole in my nose. LOL

Gosh I miss talking to you. What are you doing up so late? Looks like we

are having a nite owl session tonight. LOL Carol and Barbara I hope you are

in bed now. It's past your bedtime. I think i'll head up there now. I

started to go to bed 2 hours ago. LOL

Take care Lucy.

[Guest guest]

Hey ,

I did not have endometriosis, but I did have a double uterus. That came

from the Klippel-Feil Syndrome. My daughter has one too. We both have at

least two fused vertebrae at the top of our spine. The double uvula is

another characteristic of KFC that we both have. Her son who is now 5, was

diagnosed shortly after birth, with KFC. It was because of him that we were

diagnosed. He began having seizures when he was 5 and one half weeks of

age. The Genetics Dr. at Duke felt that it was possible that KFC was the

cause of 's neurological problems. He also has a horseshoe shaped

kidney (his kidneys are fused at the bottom which makes it appear as one,

they still function as two).

I don't know about the others in the group but I got the large size bracelet

from Medic Alert. They put Asthma, Diabetes and Fibromyalgia on my bracelet

and the RP, Sleep Apnea, Acid Reflux, Osteoarthritis, wears glasses, and so

on and so on are on my data sheet when they have to call in. Oh, The

Klippel-Feil Syndrome is on the sheet too. The thing I can't understand is

that my two sisters nor my brother have had any of these things other than a

sister having Osteoarthritis. I ended up with everything my Daddy had and

KFS is from my Mother's side of the family. My brother had heart by-pass

like my Mom. That's it, I ended up with all sorts of crazy things. I have

had Bell's Palsy, Panniculitis, tested positive for Histoplasmosis, had

several Lipomas removed, and a Lichen Planus removed. It is amazing that I

am able to remember all of this stuff when I have " Senior Moments " so often.

I will close for now, there won't be room for anymore posts on Yahoo if I

keep on.

Love all of you, Love and Prayers, Lucy

I found out something new today.

> Well, while reading AARDA's pamphlet they sent, I read where they list

> endometriosis as an autoimmune disease. I have never heard that before.

> Maybe I'm the only one. lOL

>

> My mom, sister, myself, and 2 out of 3 daughters had or have it. I wonder

> how many of you have it too.

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Isn't that wild! What is with this disease?

Love and Prayers, Lucy

Re: I found out something new today.

> Lucy, my vertebras are fused too. Also have lipomas. I wonder if any of

> this is connected to RP.

>

> I think on your next medic alert bracelet, you should move Rp to the

> bracelet. LOL

>

> Miss talking to you Lucy. I can never catch you on line.

>

> know i'm thinking of you.

>

> hugs

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

, I was treated for endometriosis and recurrent ovarian cysts for 9 years, and 3 surgeries before I had a hysterectomy in 1988. I had no idea they considered it an auto-immune disease. Fortunately, I had my three sons (but my 4th pregnancy ended in miscarriage in '84).I don't have daughters, and I was adopted, so it's been very hard to link anything. That's another reason why I'm so anxious to see what research can end up proving about the heredity.

Also, somewhat related to this, I just tried to link an article to the group about a study by Dr. Utz about screening and target therapy for auto-immune disease. I am putting the link here too, because I don't know if it worked. It's amazing how so much of this makes you say "Hmmmmmm, I wonder....". Thanks for sharing these and all the posts from . They are helpful for me, and I'm sure all the other "Newbies". Take Care, Carol G

Here's the link, I hope it works http://www.acurian.com/link.jsp?cd=FEATURE & id=0900744b8001851b

I found out something new today.

Well, while reading AARDA's pamphlet they sent, I read where they list endometriosis as an autoimmune disease. I have never heard that before. Maybe I'm the only one. lOL My mom, sister, myself, and 2 out of 3 daughters had or have it. I wonder how many of you have it too. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

I just had surgery on the 11th of March to try to stop having my periods 24 days a month! This doc told me he wanted to try an endometrial ablation on me. That's where they go in and burn out the lining of the uterus. After that, you're not supposed to get anymore periods or if you do they are supposed to be more "normal." Well, I just got a period yesterday (11 days after the surgery) and I think I am going to need the hysterectomy:( When I woke up from the Anastesia, my left ear was so sore and I could actually feel my heartbeat pounding in it. This was before I was dx with RP. I was complaining to the nurses in the recovery room. This was on a Mon. On Fri the 15th my ear blew up and the story goes on.

I also was wondering if anyone has ever heard of Collagenous Colitis. Another autoimmune disease that I was dx with when I had my colonoscopy done a year ago. At first it was dx as IBS but it was the wrong dx. When they go in and do a colonoscopy tell the doctor they have to take a biopsy because everything looked normal but I was having so many problems going to the bathroom constantly. She took the biopsy and told me I do have CC-Collaganeous Colitis. This too is very rare. I am trying to get myself together since I was dx with RP this past Mon. and put this whole picture together?? There are so many unanswered questions that I have as far as these doctors go. They treat one part of the body and then another part but I just want to scream and say HEY, look, it's still one body and let's try to put the pieces together! I have had surgery in Oct. of 1995 to remove an Atrial Myxoma. Anyone ever hear of this? Please let me know. I know I am rambling on but I am still freaked out about the new dx. I also wanted to say how great this group is. The people here are so nice and compassionate. I really think you ladies are great.

Love, The Other Sharon (newbie)

[Guest guest]

I just had surgery on the 11th of March to try to stop having my periods 24 days a month! This doc told me he wanted to try an endometrial ablation on me. That's where they go in and burn out the lining of the uterus. After that, you're not supposed to get anymore periods or if you do they are supposed to be more "normal." Well, I just got a period yesterday (11 days after the surgery) and I think I am going to need the hysterectomy:( When I woke up from the Anastesia, my left ear was so sore and I could actually feel my heartbeat pounding in it. This was before I was dx with RP. I was complaining to the nurses in the recovery room. This was on a Mon. On Fri the 15th my ear blew up and the story goes on.

I also was wondering if anyone has ever heard of Collagenous Colitis. Another autoimmune disease that I was dx with when I had my colonoscopy done a year ago. At first it was dx as IBS but it was the wrong dx. When they go in and do a colonoscopy tell the doctor they have to take a biopsy because everything looked normal but I was having so many problems going to the bathroom constantly. She took the biopsy and told me I do have CC-Collaganeous Colitis. This too is very rare. I am trying to get myself together since I was dx with RP this past Mon. and put this whole picture together?? There are so many unanswered questions that I have as far as these doctors go. They treat one part of the body and then another part but I just want to scream and say HEY, look, it's still one body and let's try to put the pieces together! I have had surgery in Oct. of 1995 to remove an Atrial Myxoma. Anyone ever hear of this? Please let me know. I know I am rambling on but I am still freaked out about the new dx. I also wanted to say how great this group is. The people here are so nice and compassionate. I really think you ladies are great.

Love, The Other Sharon (newbie)

[Guest guest]

In a message dated 3/23/02 6:26:39 AM Pacific Standard Time, Lee27a@...

writes:

<< I have had surgery in Oct. of 1995 to remove an

Atrial Myxoma. Anyone ever hear of this? Please let me know. >>

Sharon, a Myxoma is a small benign soft tumor. My book says Atrial Myxoma is

a benign, gelatinous tumor the originates in the ineratrial septum of the

heart. The tumor is characterized by palpitations, nausa, weightloss,

ftigue, shortness of breathe, fever and occasionally, sudden loss of

consciousness. It is treated by surgical removal of the tumor.

Seems like there are a lot of us getting or have had benign tumors.

Hope this helps

[Guest guest]

,

Thanks for the great information. I have never had endometriosis. At least not that I knew of!LOL

Sorry

Glenda

I found out something new today.

Well, while reading AARDA's pamphlet they sent, I read where they list endometriosis as an autoimmune disease. I have never heard that before. Maybe I'm the only one. lOL My mom, sister, myself, and 2 out of 3 daughters had or have it. I wonder how many of you have it too. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

,

I had Endo., it was treated with surgery.

Sandy

Well, while reading AARDA's pamphlet they sent, I read where they list endometriosis as an autoimmune disease. I have never heard that before. Maybe I'm the only one. lOL My mom, sister, myself, and 2 out of 3 daughters had or have it. I wonder how many of you have it too. DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi ,

Yep, that is what a Lipoma ( a fatty tumor) is and I had two the size of

golf balls removed from just below my waist on either side of my back. I

also had a Fibroadnoma, a small tumor the size of a green pea. It too, was

benign. I suspect that I may have some more Lipomas but as long as they are

not bothering me, they can stay.

Gee, we do have some strange combinations of things, don't we!

Love and Prayers, Lucy

Re: I found out something new today.

> In a message dated 3/23/02 6:26:39 AM Pacific Standard Time,

Lee27a@...

> writes:

>

> << I have had surgery in Oct. of 1995 to remove an

> Atrial Myxoma. Anyone ever hear of this? Please let me know. >>

> Sharon, a Myxoma is a small benign soft tumor. My book says Atrial Myxoma

is

> a benign, gelatinous tumor the originates in the ineratrial septum of the

> heart. The tumor is characterized by palpitations, nausa, weightloss,

> ftigue, shortness of breathe, fever and occasionally, sudden loss of

> consciousness. It is treated by surgical removal of the tumor.

>

> Seems like there are a lot of us getting or have had benign tumors.

>

> Hope this helps

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Hey me too, and I have never heard that it is an

autoimmune disease. Very interesting. I had to have

a hysterectomy because the endo was so bad. squeek

--- Sandy Catalusci wrote:

> ,

>

> I had Endo., it was treated with surgery.

>

> Sandy

>

> Well, while reading AARDA's pamphlet they sent, I

> read where they list

> endometriosis as an autoimmune disease. I have

> never heard that before.

> Maybe I'm the only one. lOL

>

> My mom, sister, myself, and 2 out of 3 daughters

> had or have it. I wonder

> how many of you have it too.

>

>

>

>

[Guest guest]

Hi and everyone

I was diagnosed and had major surgery for endometriosis in 1990. My first

confirmed and documented RP attack was 1994. I occasionally have twinges

before getting my period, and only twice had severe cramps, but really

haven't had a major endometriosis flare up since. I never heard it being an

autoimmune disease either. My sister was also operated for the same thing 2

yrs before me (1988), but thank God she hasn't had an RP attack. very

interesting though!

love

Carmela

******************************

>From: RCColloran@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: I found out something new today.

>Date: Sat, 23 Mar 2002 00:00:16 EST

>

>Well, while reading AARDA's pamphlet they sent, I read where they list

>endometriosis as an autoimmune disease. I have never heard that before.

>Maybe I'm the only one. lOL

>

>My mom, sister, myself, and 2 out of 3 daughters had or have it. I wonder

>how many of you have it too.

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

In a message dated 3/23/02 10:04:16 AM Pacific Standard Time,

L10@... writes:

<< I

also had a Fibroadnoma, a small tumor the size of a green pea. >>

Lucy, I also had these (2 ) and had them removed. Gosh, Any one else out

there who is lumpy?? LOL

[Guest guest]

In a message dated 3/23/02 4:08:15 PM Pacific Standard Time,

sisterslk@... writes:

<< Hey me too, and I have never heard that it is an

autoimmune disease. Very interesting. I had to have

a hysterectomy because the endo was so bad. squeek

>>

Squeek, this was news to me too. I kept looking at it on the AARDA pamphlet.

I think i will do more checking on this. My mom and sister had a

hysterectomy at 39 and 32. I was the lucky one, i got to wait til I was 42,

but suffered alot of years.

How are you doing on the Remicade? Still well I hope. Know I'm thinking of

you and love to hear from you.

hugs

[Guest guest]

I also had endo and had it removed surgically.

[Guest guest]

Hey ,

I also had convulsions from a high fever when I was very small, two or

three. My daughter had several spells when she was young where she either

fell or passed out.

I have tested positive for the Histoplasmosis skin test. It was performed

when I had 2 calcium deposits show up on my lungs. They said that I could

have been exposed to the bug and just never had the disease. They call it

Valley Fever where we were living at the time when I was most likely

exposed, Arizona. That was near Phoenix and the desert like surroundings

where it is so flat. The disease usually comes from bird droppings and the

spores in the air is how you are exposed.

My lungs had already been through enough before I got RP.

Now, I have an area in my lungs that I do not exhale all of the air breathed

in.

Had to have my appendix out when I was 21. It had been a chronic type of

appendicitis. Started when I was young.

If I think of anymore things that others may have had through the years that

may connect us a little closer to the thing called RP, I will post it.

Love and Prayers, to all, Lucy

Re: I found out something new today.

> In a message dated 3/23/02 10:04:16 AM Pacific Standard Time,

> L10@... writes:

>

> << I

> also had a Fibroadnoma, a small tumor the size of a green pea. >>

> Lucy, I also had these (2 ) and had them removed. Gosh, Any one else out

> there who is lumpy?? LOL

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

In a message dated 3/24/02 1:34:20 PM Pacific Standard Time,

L10@... writes:

<< They call it

Valley Fever where we were living at the time when I was most likely

exposed, Arizona. That was near Phoenix and the desert like surroundings

where it is so flat. The disease usually comes from bird droppings and the

spores in the air is how you are exposed. >>

Lucy, I live in San Joaquin Valley and it is know for Valley Fever. Now alot

of people who have had it. Gosh, never thought to mention that to drs. LOL

You'd think that the ones I've seen that live here would know. I think it is

just taken for granted.

Hope you had a nice weekend.

hugs to you & all those grandbabies

[Guest guest]

Lucy, something that I've had thru the years, where do I start? For me it started with Letterer Siwee disease (which I am starting to think was pediatric RP, but we'll never know for sure). I have a 75-80% atrophied optic nerve from childhood blindness, I have incredible problems with my spine - drs also think this is result of childhood disease as my spine was shaped in the letter S. Had terrible problems with excema, I was one of the guniea pigs for cortisone. Have had asthma since childhood. Thyroid problems (Hypo);osteoarthritis everywhere, currently having serious problems with my right knee, which may or may not be caused by my RP (hopefully, it is just torn cartiledge!). I am deaf in my right ear (also from childhood), and to put it mildly, my balance SUCKS! I am constantly falling into everything. I have also had three strokes (cause unknown), and seizures (caused by the strokes). Other than that, I am a fuzzy picture of health! Does this help? Judy O Re: I found out something new today.> >> << I> also had a Fibroadnoma, a small tumor the size of a green pea. >>> Lucy, I also had these (2 ) and had them removed. Gosh, Any one else out> there who is lumpy?? LOL>> >>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>>

[Guest guest]

Lucy : I forgot, I had that too, endo, had everything out...an I am STILL having hot flashes! It just isn't fair! Love, Judy O Re: I found out something new today. I also had endo and had it removed surgically.

[Guest guest]

, ever heard of "Mittleschmertz? (sp?)/ I had that at 16, drs first thougth it was my appendix. They said that basically the ungodly pain was cause from the egg "exploding" from the ovary. I wonder it that was a precurser? I too had a total hysterectomy for endometriosis. Dr. said one ovary was completely detroyed and the other one was worse! I also had lived with it for about 5 years before I gave in and had the surgery. Glad I did, tho know I wonder. Love, Judy I found out something new today.>Date: Sat, 23 Mar 2002 00:00:16 EST>>Well, while reading AARDA's pamphlet they sent, I read where they list>endometriosis as an autoimmune disease. I have never heard that before.>Maybe I'm the only one. lOL>>My mom, sister, myself, and 2 out of 3 daughters had or have it. I wonder>how many of you have it too.>>_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

/Lucy, I have one under my chin, and I hate it! If I bow my head, I look like I have jowls! I guess vanity and RP just don't go together! Love, Judy Re: I found out something new today.> In a message dated 3/23/02 6:26:39 AM Pacific Standard Time,Lee27a@...> writes:>> << I have had surgery in Oct. of 1995 to remove an> Atrial Myxoma. Anyone ever hear of this? Please let me know. >>> Sharon, a Myxoma is a small benign soft tumor. My book says Atrial Myxomais> a benign, gelatinous tumor the originates in the ineratrial septum of the> heart. The tumor is characterized by palpitations, nausa, weightloss,> ftigue, shortness of breathe, fever and occasionally, sudden loss of> consciousness. It is treated by surgical removal of the tumor.>> Seems like there are a lot of us getting or have had benign tumors.>> Hope this helps> >>> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT ISRECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTORBEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOURPHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT ANDTREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU>>

[Guest guest]

, what is the AARDA? Judy I found out something new today. Well, while reading AARDA's pamphlet they sent, I read where they listendometriosis as an autoimmune disease. I have never heard that before.Maybe I'm the only one. lOLMy mom, sister, myself, and 2 out of 3 daughters had or have it. I wonderhow many of you have it too.

[Guest guest]

In a message dated 3/26/02 3:01:07 PM Pacific Standard Time, judyo_93@...

writes:

<<

, what is the AARDA? Judy

--- >>

Judy it is American Autoimmune related diseases Association. Their web site

is

http://www.aarda.org