I should probably know more about this disease and I apologise upfront for my ignorance.
Here is my story:
My grandmother was diagnosed with MS about 15 years ago - but her symptoms changed constantly and she was forever going backwards and forwards to the GP. This culmantated in an undiagnosed liver disease about 10 years ago. Around this same time my aunt (her sister) was diagnosed with an overactive thyroid. My grandmother was then diagnosed with an underactive thyroid.
Family get togethers were like some kind of medical forum as within months my cousin and my mother were both diagnosed with arthritis and underactive thyroids. All four family members had VERY similar symptoms and started a crusade to find out the real diagnosis.
After a few years my mother was reading the health pages of a women's magazine and came across an article for Lupus - she says it was like a revelation - she had every symptom.
Within a few months all four of my family members were diagnosed with Lupus.
My mother has up days and down days - overexertion of any kind means she has to take to her bed for up to a week to recover. She was always an active woman so unfortunately when she has an up day we have to practically force her to take it easy.
She has constant joint pain; she has been diagnosed with IBS; she is on several types of medication every day; her hair has thinned; she is sensitive to sunshine; she has a constant rash. She was previously an outgoing and highly active person and now it takes days of cajoling just to get her to come on a small shopping trip.
Does anyone know if there is a hereditary link - over the past few years I have started to display some of the same symptoms and thyroid tests have shown a marginaly underactive thyroid.
Also - which tests were you given to determine that you had Lupus - my mother has frequent blood tests but they only show up that she has an infection - nothing specific.
I would also know what I can do to help - the whole family is very understanding but sometimes we forget how ill she is.
Thank you for any help and/or advice you can offer.

Hello, I didn't want you to get discouraged from no quick replies.
There are several studies getting underway, I hear, that are exploring the gene link.
I am newly diagnosed (since May) but realize I've had it for some time. In fact some of the symptoms (like Reynaud's) dates back to childhood.
What is almost overwhelming me is that my mom, who died in May, displayed classic lupus symptoms as I look back. She had severe kidney failure and a host of other autoimmune diseases and her HMO doc never said boo about it and never diagnosed nor treated anything. She was expendable, I guess, to the California HMOs. I wish I had known what lupus WAS then, it was two weeks after her death that I started my 2 month journey with my doctors before I was diagnosed.
I received a request from someone to participate in a family-link survey. I will try to find it and post it for you. I promise I will also gather a couple of links that I found useful while learning all about this. I did find a statistic last week from (who knows, but I remember the source seemed credible) that the known "numbers" show that our sons have a 3% chance of developing an auto-immune disease and our daughters a 10% chance.
Jeri

Jeri
Thanks for getting in touch.
Like you, my mother now swears that her grandmother had all the classic symptoms and just wishes that there was better awareness of this disease.
I would welcome any advice or contacts you could give me.
Thanks again
Nix

hi nixx, I was diagnosed almost 7 years ago.
First thing was an underactive thyroid and then down hill from there. Kidney problems and now liver problems. I have been way back in history and apart from a cousin with a thyroid problem, there is nothing to suggest in my family that it is hereditary. I think i am just the unlucky one. up until I had my first child at 28 I had never had a health problem, may be the thyroid was playing up on and off but apart from gaining weight and feeling alittle tired I was always ok. I would be very interested in knowing how this terrible illness rears it's ugly head, but no one really knows yet....

Hi Nix,
I'm finally back.
You might try going to egroups.com and search for rockingbabes it's a lupus support group. you may learn some stuff from persons who have been diagnosed with lupus.
I'm sorry that I can't set up a link for you, but if you will highlight, copy and paste each address into the address line at the top of your screen, you can get to these links on lupus:
http://www.lupus.org/
http://cpu2.omrf.uokhsc.edu/lupus/
http://www.uklupus.co.uk/
http://www.hamline.edu/lupus/index.html

I hope these will get you started. Your family member is fortunate to have you as her advocate.
Jeri

I finally located the address for the agency that is doing familial autoimmune research. go to their website- they'll send you a questionaire.It's the american autoimmune related diseases association, inc in Detroit Michigan (usa)
Jeri http://www.aarda.org

Hi Jeri...I have never posted here and was just browsing, but I have a question. I have Lupus and Sjogrens Syndrome and possible FM. My grandmother had Lupus also and her sister had Scleroderma. Her other sister had Lymphoma. I had always been told that the tendency to develop auto immune disorders was an every other generation trait. Have you(or anyone) ever heard of anything like that? I liked the idea of my daughter and son being "safe", and thought if any grandchildren were stricken that there would be a cure by then. Thanks for any replies!

Hi MnMetalMouth!
The really good book that I got a couple of days ago (updated version of "The Lupus Book" repeated the stats that I head read some other credible place- a familial link of 3% for sons and 10% daughters.
Sorry to hear the combination you have. Is it true the FM complicates the treatment of lupus because one med interferes with the other? Yuck! As if you don't have enough to contend with.
I am like you- don't want this threatening the kids. I watch my girls especially, cause they are in the target age right now. They are pretty savvy and when the oldest had some health problems, she marched right to the doctor armed with all she could. yhey'll do fine- info IS power! :-)
Jeri in TN

Hi Jeri...Good for your daughter! I love seeing strong girls and women. The combo of diseases is a pain, but I am lucky that none is too serious. I refuse to take prednisone. I am only 34 and know what they can do to you. I have degenerative disease in my jaw of all places(hence, my name http://www.healthboards.com/ubb/smile.gifbut I stay active and that helps! Thanks for the info!!

Dear MMM- you gave me a good laugh today! Thanks!
I had just read about jaw-involvement yesterday for the first time. Now that's got to be more than just a pain! Whew- I work my jaw so much- I'd really be disabled if it hurt. Enough kidding-
Seriously, can the joint be restored if it degenerates to the point of non-function? Could local steroid injections help like they do in the knee (with the thick stuff that isn't supposed to migrate into the system)?
I cared for a patient with adrenal insufficiency when I was a young student- I was almost overwhelmed by his condition and how debilitated he was. Soooo, needless to say, prednisone is my ally and my enemy. Once the methotrexate kicks in in the next week or two, I will begin cutting back. It's the only thing that keeps me working right now, literally, and my case is not nearly as serious as many I hear and read about. I just want to get off it and lean on the plaquenil and methotrexate as long as they'll work. So far I have kept such a tight control on my diet, and therefore, my blood glucose, that the prednisone hasn't raised my glucose levels significantly.
What are you on? It's a balancing act, isn't it?
It's good to communicate with others who understand this tightrope we walk. I enjoy sharing experiences without whining and without belittling the significance of what we are surviving.
Jeri in sunny and cool TN

Hi Jeri...Sunny and cool sounds nice! I walked outside this AM and my nostrils froze together! Anyway, I post on the TMJ board a lot. It is a terrible thing. The condyles on my mandibles have totally eroded. I have had several surgeries and tons of treatments. Steroid shots in the joint can help a few times, but repeated use can actually cause the joint to degenerate more. They do have TMJ joint replacements, but they have been a complete and dangerous failure. I make due with soft food, little speaking or smiling, and drugs! I take celebrex, vicoden, valium, and motrin and lots of zantac. The ironic thing is that insurance companies consider TMJ a dental problem and won't cover it! It takes months to argue that it is caused by my Lupus and not a dental issue. You wouldn't believe the # of people on the TMJ forums who have auto immune diseases. Oh well, look how I have babbled! Take care!! http://www.healthboards.com/ubb/redface.gif

Hi Again- I'm definately glad I'm not in MN right now! I am originally from MI but grw up from teens in So Calif. We get very little snow here and I am glad, glad, glad- xthe stress of driving on icy roads wears me out for a week. I hate being such a woosie! I guess that's what I had the most difficult time adjusting to- admitting that I wasn't some kind of invicible superwoman. (actually I NEVER was haha, but somehow thought I was either SUPPOSED to be or expected to fake it.)
See here I am whining about mu limitations and I haven't had to have surgery and don't anticipate any. I can promise that the next time I think about my diet- I WILL NOT see it as limiting- I'll be thankful for chewy things.
Were you successful in convincing the insurance company that you are suffering a medical disease or are you still fighting them? Or, is it more like the norm: you fight with every treatment? I am truly thankful for my insurance and truly thankful for the benefits that my employer provides. However it seems that things could be MUCH easier for the patients and care-givers if the insurance compnay would play by the same rules: the Golden Rule.
When did you start having problems? You are so young; I know that this has impacted you tremendously. Have you found a way to turn this into a triumph most days? I know that must be a struggle.
I'll be praying for your comfort and for your care-givers. I'll be thinking about your frosty-nose. I haven't forgotten what it feels like to breathe in and have frozen nose hairs. Hee hee
Jeri

I have lupus, My mom has lupus and her sister has an autoimmune disease of her liver. Primary Bilary Cirroisios(I'm sure I spelled that wrong). Oh yea my great grandmother (mothers grandmother) they think she had an autoimmune disease, had RA for a fact. I told my mother that we should do a case study. I'm still waiting on my other blood work, my ANA was 1:160 sed rate was 38 (nothing like yours) and my CRP was 9.8. I was DX with Mixed connective tissue disease about three years ago, but now they think it is more Lupus. I have lots of symptoms right now. My spine is in bad shape, kidney infections all the time, red checks and forhead, burning feeling on face and chest, finger pain, can't even write now, elbow, wrist, ankle, knee pain. I run a fever everyday (this really sucks), and the fatigue is awful. Your lucky to have your dx, now you can start to recover. The meds will make you feel nervous and keep you up, talk with your doctor about this, he can give you something to help calm the nerves. Good luck and God Bless.

I am not sure if it is hereditary or not, but like you, I have a family history of autoimmune diseases, particularly on my mom's side. I am still in that "we have to figure out what is going on" phase, so I have not been diagnosed; however, my mom has a thyriod disease, her sister had Lupus, and her mom had RA. There there has to be something to that, right? Well, be blessed!

Blessed4Life