Medical mysteries

Posted: Tuesday, May 13, 2008 12:35 PM by Barbara Raab

By Robert Bazell, NBC News Chief science correspondent

Tonight we begin a series called 'Medical Mysteries' about autoimmune diseases. We picked the title because these very common conditions remain incurable, difficult to treat, and poorly understood.

An autoimmune disease strikes when the exquisite system that protects our bodies from viruses and bacteria goes haywire. The white blood cells and the proteins called antibodies turn on us. The result can be damage to almost any organ in the body—chronic illness that can be severe and even life-threatening. The National Institutes of Health has a good primer on autoimmune diseases.

In the series we will examine three of the most common autoimmune diseases: lupus, rheumatoid arthritis and multiple sclerosis.

In most cases, autoimmune diseases strike women far more often than men. Why that is so remains one of the biggest mysteries of all. Doctors have long assumed that women’s immune systems have to be different because a women’s body must tolerate a foreign object –- a fetus. But no one has been able to pin down the reason.

As Dr. Stephen Hauser, a neurologist at the University of California, San Francisco told me: "It's an aphorism in medicine that autoimmune disease may be a price that women pay for successful reproduction. This said, we don't understand exactly why female gender is associated with autoimmune diseases and why it is associated so strongly in some and less strongly in others. Some of the explanation must lie in hormonal effects that relate to the female, but we are striving to find the details.”

This evening’s report focuses on Lupus. The Lupus Foundation of America’s website is an excellent source of information.

We tell the story of one woman, Jennifer Pearce. Like so many patients with autoimmune conditions, she suffered through difficulty with the diagnosis. In far too many cases this leads patients to believe (or to be told by a doctor) that it is all in their head. Patients with autoimmune conditions also can manage to look good and feel horrible, making it very difficult to function in the world.

There are few truly effective treatments for Lupus and they often carry severe side effects. A great hope for finding better treatment lies in some recent discoveries about genes associated with the disease. The physician-scientist we interview. Dr. Lindsay Criswell also of UCSF is heavily involved in this effort and you can read about her research here.

Editor's note: The Lupus Research Institute is another good educational resource. The organization also has a website about clinical trials.

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Comments

My friend told me that you aired the program on Lupus. I was diagnosed in 2001, I also have fibro myalsa, dry mouth, dry eyes and have a bout with thyroid cancer. It is not fun! I too, have trouble eating, my food gets caught in my teeth and gums and my eyes are so dry, I sometimes keep them closed and put a cold cloth on them. I am still waiting for disability since 2001. Keep up the good work on reporting on these autoimmune diseases.

Andrea Schmith, Port Charlotte, Florida (Sent Wednesday, May 14, 2008 8:53 PM)

Thank You for shining light on this horrible disease. I'm a 27 yr old hispanic mother of boys. After every pregnancy I got worse. I've had symptoms since I was 13 yrs old. It took about 2 years to get diagnosed with Lupus, RA, Raynauds and Fibromyalgia. I'm currently the 4th one in my family with Lupus. I take 21 pills a day. And today my Dr. suggested I go on Orencia and Methotrexate. The medication used to treat these diseases are as bad or worse than the disease. We need more awareness and financial help.
And yet EVERYONE says "But you look healthy".

Please be supportive of those with these or any other diseases.

Celina, Painesville OH (Sent Wednesday, May 14, 2008 11:06 PM)

Thank you for your segment on lupus. I was diagnosed 1 yr ago. I never really felt good and I could not pinpoint it to any one issue. While hospitalized to have my gall bladder removed my BUN and Creatinine (kidney function) were abnormal. I had a kidney biopsy to confirm my diagnosis. I suffer from anemia due to my kidney function being poor as kidneys help in the manufacture of red blood cells. I agree the fatigue is probably the worst. If I don't get enough rest I eventually have to just sleep for about 15 hours to catch up. I underwent a course of plasma exchange and chemotherapy which I responded to well.
Thank you once again for your piece. The disease is indeed a mystery to those who treat it and those who live with it.

Barbar A. Bruce, Bellmont, IL (Sent Wednesday, May 14, 2008 11:50 PM)

Thanks for doing two news specials on auto-immune diseases. There are so many people that suffer from the many diseases that fall under the autoimmune spectrum yet there is not much publicity/research/drug company interest. My hope is that with increased knowledge of the terrible conditions that are caused by autoimmnue diseases, more money can go to finding cures!

K. A, Los Angeles, Ca (Sent Thursday, May 15, 2008 12:22 AM)

I think you have touched the tip of the iceberg with mysterious neurological diseases. My husband has MSA and there is no treatment in the US. We are currently in China for 3 months of Traditional Chinese Medicine to find relief.

Marilyn Sassman, Blue Eye, Missouri (Sent Thursday, May 15, 2008 7:34 AM)

Thanks for making people aware. I am a 48 year old white female dianosed with Lupus for 3 years. I have had these symptoms since my early twenties. I just thought it was just me,turns out,it is me and Lupus. Although,I still work at a Junio High there are not many "normal" days with me.I later found out I have 1st cousins with it also. At first, I wanted everyone to know what was wrong because I was in such shock, I found out most are not interested and say "Oh, I have felt like that." Or "I have a red spot like that,look at it." I also get the "You look so good" comments.

H Ransom,Alabama (Sent Thursday, May 15, 2008 9:56 AM)

Great stories, my 13 year old daughter was diagnosed with childhood SLE Lupus at age 12. Membranous neuropathy is the most serious aspect of her Lupus at this time. Funds for further research are crucial in finding a cure for this "stealthy disease" as well as educating the public about Lupus in general

Maura McCurdy (Sent Thursday, May 15, 2008 3:26 PM)

Thank you to the NBC Nightly News for doing a story on autoimmune diseases! These diseases are lacking awareness although they affect over 23 Million Americans.

Although - Sjogren's syndrome was not chosen to be highlighted - awareness around any autoimmune disease is important. Since these diseases tend to run in families and many patients have more than one autoimmune disease, awareness is critical in helping people get diagnosed and treated effectively.

As CEO of the Sjogren's Syndrome Foundation, I want to represent the almost 4 Million Americans suffering from Sjogren's syndrome. As the 3rd leading autoimmune disease in the US - more common than lupus - it is also severly under diagnosed. Patients tend to go for 6 - 7 years until a diagnosis is found. Sjogren's syndome symptoms include dry eyes, dry mouth, fatigure and joint pain - however the disease can affect any body organ or system.

Again - many thanks for this great series.

Steven Taylor, Bethesda, Maryland (Sent Thursday, May 15, 2008 4:59 PM)

I too am from Modesto, Ca and went through the same thing with Drs from age 16 through 44 yrs old when I was dx.
I have more than just Lupus, I have MCTD, Mixed COnnective Tissue Disorders.
I wish everyone the best, do not give up up. Change Drs.if you are not satisfied. Change Drs if they tell you to quit reading the Internet or books on the subject.
And always, always get copies of your lab work & office visits. You'll be surprise how different it shows compared to what your Dr is really telling you how sick you are.

Kathy Walters Modesto CA (Sent Thursday, May 15, 2008 6:22 PM)

Love to see something on A Plastic Anemia. A very rare illness and life threating. I require platelets once a week and blood every three to four weeks. This is the start of my fourth year since being dignosed and have never seen anything in health news about this illness.

Barbara Scott, Harlan, IA (Sent Thursday, May 15, 2008 7:06 PM)

First of all, I want to thank you for the series on these anti-immune diseases! I am a 44 year old Hispanic woman suffering from Rheumatoid arthritis for 22 years now. After going through so much pain, medicines, depression, etc, the doctors tell me now that I am going to need foot surgery. This is truly a devastating disease. I agree with Melinda Cooper-Polakoff of Calabasas, CA. I also read "The Road Back" from Dr. Brown and wondered why there isn't more research on Tetracycline. I also agree with Sally from Los Angeles and would love to see an Oprah Show regarding these debilitating and painful diseases. I recently found out that my cousin's daughter was diagnosed with Lupus at age 14! Please we need more awareness and better treatment!

Maria E. Posada, St. Charles, IL (Sent Friday, May 16, 2008 2:24 PM)

Can you please provide a video link to this story? I missed the story and would certainly appreciate seeing it. Thanks so much.

Dani, Atlanta, GA (Sent Sunday, May 18, 2008 11:10 AM)

I have AOSD adut onset stills desease. Im hoping that you will have a segment on this very rare, and painful desease. There is no cure for it , and very few people have ever heard of it . Im hoping my letter is accepted.
Sincerely,
Josie a. Fuller
Palmdale, California

Josie Fuller , Palmdale, Ca. (Sent Monday, May 19, 2008 12:57 AM)

I think my daughter and I suffer from lupus sypmtoms, myself for 1 1/2 yrs and the doctors say my tests are negative so I don't have it. I am suffering without help from them. It is now affecting my brain. My 14yr old daughter for 8months is having symptoms butterfly rash, fever, aches, mucsle pain, head hurting, knee pain, skin hurt, etc. her dotors say shes negative also and push her away...any advice...I always kept going forward for myself but running out of options...now its my kid...we live in RI

Lisa,Wawick,RI (Sent Tuesday, May 20, 2008 3:53 PM)

I was fascinated by the comment by Elinor Mullin, Fayetteville, Arkansas that auto-imune disorders can be associated with Turners Syndrome. My doctors in the UK don't seem to be aware of this. I am a Turners Syndrome women who also suffers Multiple Sclerosis and Rheumatoid Arthritis and always felt there must be some connection. Thankyou.

Juliet Horton (Sent Wednesday, May 21, 2008 5:14 AM)

I was diagnosed with Lupus about 5 years ago after coming down with a rash and suffering joint pain and fatigue. I'd spent the summer out in the sun. I am lucky enough to have insurance that allows me to visit specialists without referrals from my primary care physician. With that I took myself to a dermatologist and a rheumatologist; I had done my research and assumed rheumatoid arthritis. After a few months of blood tests it was determined that I had Lupus.

Thank God I have not suffered some of what I have read. My medication, Plaquinil keeps my pain and fatigue under control with few side effects.

I have no problem, so far, with people not understanding. The bad part is that so many people I have told already know about it because they know someone who has been affected in one way or another.
This weekend I attended the first LFA Walk in New York. I hope they can fianlly open an office in NYC and plan to get more involved in helping other who are suffering more than I.

You are ALL in my prayers.

Hilary Wilson, Brooklyn,NY (Sent Wednesday, May 21, 2008 9:28 AM)

Thank you! I can relate to Jennifer's battle with lupus. I'm a 40-year-old female with lupus. I was not offically diagnosed until 2006; however, 23 years ago I had a heart attack due to anticardiolipin antibody syndrome, which appeared in my second pregancy. My baby had to be delived early and he died 3 days later. My first child was stillborn probably due to the same disorder. I now have a wonderful rheumatologist who has prescribed coumadin and several immune-suppressant drugs. I have applied for SSDI and I have been denied twice. Just like Karen's daughter, people constantly tell me how good I look and that I don't look sick. It is so frustrating! Lupus needs to be given the same recognition as cancer, diabetes, etc. I read that it has been 40 years since the FDA has approved any new drug for the treatment of lupus. Thank you for your story.

Karla (Sent Sunday, May 25, 2008 6:23 PM)

Thank you for raising public awareness of the nature of these insidious diseases. I am a 42 year old man that has been treated as a hypochondriac since I was a child. In the last decade or so my symptoms have become even more bizarre. Then at 40 I had a heart attack. When the Doctors found I had clear arteries they finally began to seriously look for a cause. What they found was SLE. I'm unable to work, financially ruined, have to sleep in a chair, and every morning when I wake-up it is a genuine surprise. After 40 years of Doctors not trusting me, it is now impossible to trust them.

Tom Welsh, Silver Spring, Maryland (Sent Monday, May 26, 2008 5:26 AM)

Lupus is truely a mystery disease. It has been my mystery for over 12 years and only recently have I learned to accept it. I was in remission for over 12 years. However, just this last week I was rushed by ambulance to the hospital. my body just decided to shut down. What more of a mystery is it to swell up like a balloon and just stop breathing? Nothing is ever what it seems with Lupus. I have tried to learn to watch for signals, however, even "those" signals can change over time. So much more needs to be done about Lupus and this focus is wonderful. Thank you for bringing attention to this very confusing, frustrating and deadly disease.

Christine Henry, Tustin Ranch, Ca. (Sent Wednesday, May 28, 2008 2:32 PM)

I am a 36 year old female who has been diagnosed with Lupus since 2005 and just recently Hashimoto's thyroiditis. I also have an older sister who also has Lupus. I have lost two maternal aunts due to complications from Lupus. I have recently had to step down from my job in a medical clinic which I loved due to battling on-going fatigue, joint pain and severe headaches. I see six specialist and a primary care doctor and yet everything still seems so confusing and frustrating at times. It is so hard to believe in what they are saying or what medications you should take when in all honesty they don't know much about the diseases that you suffer from. More and more women, children and even men are being diagnosed with a form of Lupus or an autoimmune disease but, there are only a handful of doctors that really deal with these diseases. It is one of my greatest wishes that more physicans and others will become more involved in finding answers and treatment for us. My heart goes out to everyone and we must never stop praying for further knowledge and treatment for our illnesses. Thank you you for starting this series!!!

Jenny Clay (Sent Wednesday, May 28, 2008 6:31 PM)

I'm sorry that I didn't know of your special. I happened to be on the LFA site and saw this. I have been living with this disease of Lupus for close to 20 years. Some of the med's side effects are as bad as the disease itself. After 15 years on Prednisone, and developing severe Osteoporosis, that my bones would spontaniuosly break has played a tole on my life. The complications in which have taken over my body could be mind boggling. But I continue to research and study about this Lupus everyday, and learn something new. My joints are 20 yrs. older than my age and ER Dr. told me Sunday... I am now in a full leg brace waiting to find out what happens next. My spine is actually crumbling, and not to mention how it's effected my central nervous system. I could go on for more space than this allows. Thank you, and PLEASE do more to help fund research to help us.

Barbara, Crawfordville, FL (Sent Wednesday, May 28, 2008 7:54 PM)

I was misdiagnosed with everything from the flu to hyperchondria also.After about ten years of suffering in silence I was finally given a result of Sjogren's Syndrome.Then came the diagnosis of lupus.It is sad to say that you can at last put a name to your "problems" and be excited by that.Please let Kristie in Sudbury Ma know that there is a medication that she might be able to use for the dry mouth. It is called Salagen. It has been a life saver for my dry mouth. I no longer have to worry about my lips getting stuck above my gums when I talk or having to mix water with my food to be able to swallow

Coleen Shelton Ct. (Sent Wednesday, May 28, 2008 9:23 PM)

Thank you very much for bringing the aware of this disease to the public. I know a brother and a sister both diagnosed with lupus within 3 years. Please note: there are men out there with lupus too! We need better medicine and treatment for lupus. We need more media coverage for autoimmune disorders.

P.C. M., Fremont, Ca (Sent Tuesday, June 03, 2008 7:28 PM)

Im very sorry I missed the program. I loved reading all the comments though.I was diagnosed with Lupus about a year ago, but I've had symptoms for atleast the last 10 years. Finally, my orthopedic specialist sent me to a rheumatoligist and that was when blood tests showed I had Lupus. Besides the arthitic pain and fatigue I have, the most aggravating thing about the disease, as many sufferers mentioned, is that you look so good noone believes you are sick! The family doctor I went sent me to a shrink! I found out that if you feel your doctor is not listening to you or does not believe you, drop him like a hot potato.Dont waste years hearing a doctor telling you it is all in your head, especially if he doesnt seem to be doing much labwork.
I have a very physically demanding job (letter carrier) and struggle with pain everyday. I also struggle in my work environment with the opinions of people uneducated about auto-immune diseases, which is just about everyone. I was also called a malingerer at work.I asked what that meant. HE said to look it up in the dictionary. I felt so humiliated when I found out that it means "someone who pretends to be sick in order to avoid work"!
So as you can see there are mental obstacles as well as physical obstacles to this disease.So believe in yourself and find the right doctor and take a proactive position in fighting your disease. There are lots of alternative treatments that you can try too. Good Luck!

Wendy Robinson (Sent Wednesday, June 04, 2008 12:09 PM)

Bless you all that have Lupus - it's a scary condition with no cure. My daughter was diagnosed 18 months ago and probably had lupus/RA (known as MCTD) for 5+ years. I was the only one who believed her. Now I make sure everybody does! She almost died last month due to a simple ear infection, lost her hearing, developed bells palsey and now has a hole in her ear drum - people around her have woken up about it! The drugs and treatments have ups and downs. Find a GOOD dr. It's important. Take the drugs and keep getting bloods tests - it's so important. Listen to your body and see your dr. every 3 months. Keep up with it and stay alive! Lupus will throw all kinds of things at you - be informed. Oh - and stay out of the sun!

Jill Barnes, Loveland, OH (Sent Wednesday, June 04, 2008 6:25 PM)

my bautiful 20 year old daughter meets the criteria for sle but does not have the blood markers yet. he illness began in 2004 following gallbladder surgery.The first sign she had was an extreme amount of hair loss, followed by abdominal distress, migraines, joint pain and stiffness, and a persistent low grade fever. At the time she was also using an artificial tanning bed several times a week which seemed to make her symptoms worse. She has been to many physicians, the worst of which asked her if she was in an abusive relationship. It is true that this miserable disease can be nearly invisible and many people unjsutly question whether or not she is ill because she "looks so good". We never know what the day will bring so she is hesitant to make plans for anything in advance. It has been four years of hell.

kathleen muthig (Sent Thursday, June 05, 2008 10:52 AM)

I am a 55 year old male disgnosed with Lupus (SLE) August 2007. Six years ago I was hopsitalized for 12 days with a headache that I had for 14 Days together with some rash on my hand. I came out of the hospital undiagnosed. I now believe that this was the beginning of my Lupus Career. Between 2002 and 2007 I suffered lot's of joint pains until finally my family doctor told me that I had lots of fluid on my lungs. It took about 4 different test before my Rheumatoid Specalist could confirm that I did in fact have the mistery disease. It's nothing to do with incompetence, it's the difficulty in diagnosing and treating Lupus. It left me with scar tissues to my lings. I become short of breath most times, around my eyes hurt and it affects my vision at times. I am still on small dosage of steroids at the moment.
The better of me said not to give up so I still try to be very active, still exercise and do all the things necessary to keep me going.
This is my first visit to this site and hope that some miracle will happen and allow the researchers at the Lupus Foundation to find a cure for Lupus and for all of us.

Basil Ward, St. Michael, Barbados (Sent Thursday, June 05, 2008 12:22 PM)

Basil Ward, St. Michael, Barbados (Sent Thursday, June 05, 2008 12:28 PM)

My son was diagnosed with SLE when he was 12 one of the only reasons was because he presented with the butterfly rash. It is thought that men are less likely to be diagnosed with an autoimunne disease is beacause a doctor is less likely to diagnose it for a man.

Dennis Martinez (Sent Thursday, June 05, 2008 11:21 PM)

11 years ago I was diagnose with Lupus. No other family member has it. And I work full-time. I have had several flair ups. In 2004 I had a real bad one. I have hypertension/ it affected my heart, my kidney. I try very hard to keep a postive attitude for my family. But like everyone I am hurting real bad inside. Please keep up the good work that you are doing of sending out messages about this disease "LUPUS". No one understands the pain and sadness we go though. Again thank you. And keep up the good work. We need to find a cure for our children's future.

Estela B. Gonzales, San Antonio, Texas (Sent Saturday, June 07, 2008 3:33 PM)

I've had LUPUS since I was 18-I'm now 38 yrs. old. I've had my up and downs with this disease...I now see Dr. Adriana Pop-Moody here in Corpus Christi, Tx. She's done wonders for me. I'm now down to 12 1/2 mg. of Prednisone. LUPUS is deadly only if you let it take control over you. I live my life as if it were my last...I'm enjoying my life not wanting that pain to exist. Please seek comfort in others with LUPUS. Everyone has different side effects of these disease.

Bernadette Gonzales, Corpus Christi, Tx (Sent Tuesday, June 10, 2008 3:08 PM)

Thank you for addressing auto-immune diseases. I have Insulin-dependent Diabetes for 38 years now, Hypothyroidism, Fibromyalgia, peripheral neuropathy hands/arms and legs, with painful days and nights. Please continue research on auto-immune diseases. Thank you for caring!

April Mangum (Sent Wednesday, June 11, 2008 8:17 AM)

My daughter became very ill her freshmen year in college and no one knew what was wrong with her. We were told that maybe she had lime disease becasue she plays golf. Well that was not true. At the same time I began to walk with a limp. My knee began to hurt. I ignored the pain because I was focusing on Alexis. My husband brought her back home and we were told she had lupus and I was later told to have RA. We became ill at the same time. It has been hard but we are fighters and we have a strong system support. Reading all the other comments show we are not alone in this fight for our life.

Sharon Abrams, Brunswick, Maryland (Sent Monday, June 16, 2008 4:02 PM)

THANK YOU.." FOR SAYING A LOT FOR THIS LUPUS.. I FOUND OUT I HAD LUPUS WHEN MY HAIR FELL OUT AND AFTER 3 AND HALF YEARS OF PAIN, TIRENESS AND FRUSTRATE WITH THE DOCTORS WERE NOT TAKING ME SERIOUSLY NOT PAYING CLOSE ATTENTION SAYING"YOU ARE YOUNG AND HEALTHY.. ITS JUST ALL IN YOUR HEAD ""GUESS AT THAT POINT IT WAS..ON MY HEAD..OFF WITH MY HAIR..32 AND BALD LIKE HAD CANCER AND BOTH ARE SERIOUS AND NOT IN OUR HEAD STILL STRUGGLING not able WORK AT A YOUNG PERSON SPEED.Thank you MG.,MODESTO,CA"""""" YOU HIT EVERY THING I WENT THREW AND GOING THREW AS OF NOW SM.,NEW YORK,NY

SHARMANE MCLEAN, MANHATTAN,NEWYORK (Sent Monday, June 16, 2008 5:32 PM)

While I am thrilled to see any publicity that raises awarness of Lupus, which my Grandmother suffered from, MS, and Rhuematiod Arthitis, I would even be more thrilled to see any story on Behcet's disease, which has devastating effects also. Many of the same problems of Lupus accompany Behcets. Not many people are diagnosed with Behcets, it is a rare and difficult to nail down. I had once been diagnosed with Lupus,after 16 years of being sick, and not being properly treated, but after 3 agonizing years, now it is believed I have Behcets.
visit www.behcets.com for more information.

Suzanne Rodriguez Alice TX (Sent Monday, June 16, 2008 7:12 PM)

I have a 1st cousin that was diagnosed with Lupus at a very young age. She has struggled with school/work for as long as I can remember. Unable to make the walk across campus, having to have her parents once again take her home. She is a wonderful person to suffer like she does while encouraging me thru brain surgery, pagets disease and now a lupus diagnosis on top of RA, Fibromyalgia and several others. Thank you for focusing on such a dreadful disease it can only help to encourage our friends and family that suffer daily! People need to realize that just because an individual doesn't complain all the time, look terrible, etc. doesn't mean they aren't suffering miserably!
An article on Pagets Disease of the Breast would be great since I've had 3 positive paths and no one is doing anything about it. It's as if they don't understand so we play the waiting game!
Thank you again for sharing information with the public, it can only help!

Patty, Hot Springs, AR (Sent Wednesday, June 18, 2008 6:46 AM)

I join on the crowd of thousands and thousands and thousands of people who suffer from all kinds of autoimmune or some how auto-immune related sufferers who are screaming for HELP! I am one of the ones who as a negative ANA, but symptoms of several autoimmune conditions but not enough of one type of disease to say that I have that disease. Despite all of the tests that say I don't have an autoimmune disease I still suffer with severe debilitating pain, chronic fatigue, and much changed life since I went on disability at the age of 50. I can't live alone, and I can't drive a car so I most of my life is spent alone inside the walls of my home which is now my prison. I have a wonderful daughter who loves me so much she is living with me so I don't have to go into assisted living, but I cry deeply for her because she doesn't have friends and a life that a 30 something person would have. Compared to most, I am blessed with a decent home I won't lose to foreclosure and I have secondary insurance as long as my employer doesn't pull the plug on that which they have the option to do at any time. Like so many have said, we look "fine", "normal", but on the inside we are wasting away. I have responded to medication used for autoimmune disease treatment so that is another confirmation as well. The only problem is that the long-term (no one knows how long "long-term" is) use of this drug can cause cancer. So have I won or lost? The drug gives me relief from pain, but is horrible knowing everyday I take this drug I could be killing myself.

I wish I had seen this broadcast, but I just happened to surf in here today following an obscure link off a crafting website. Is there a way to watch these shows on-line or to get a printed copy of the transcript? I've looked around on this page and don't see any kind of a link.

Beth Schroeder, Knightdale, NC (Sent Thursday, June 19, 2008 10:07 AM)

I was diagnosed with SLE Lupus in 2004. I did not see the program however, it is a terrible disease. I've read several of the post and I can relate to all but mainly two: not looking sick and my cognitive thinking being off. Oh my. It is not pretty. I work everyday and struggle to get out of the bed but right now, it is a must. I've had pleurisy and issues with my kidneys. My wonderful does not understand my illness but I'm done trying to get understanding from a person that cannot relate. What I have found being informed helps me and talking to others that can relate.

Kimberly, Romulus, MI (Sent Thursday, June 19, 2008 1:02 PM)

Hello, i am 25 years old and have Chronic Fatigue Syndrome for the last 5 years, it has been horrible to find a doctor who could understand, No one believes how extremely tired and bad i feel. Please do a show on cfs and bring light on this horrible horrible diease

Vicki (Sent Monday, June 23, 2008 9:57 AM)

I have SLE and have for 10 years- however, get a proper screening for "Lyme Disease" also. IgeneX lab in Cal would be a start. Lyme may precipitate SLE and other autoimmune diseases.

Jacki, Spfld IL (Sent Monday, June 23, 2008 11:42 AM)

Help! I have Lupus, but it is not severe. I'm not on medication. Can Lupus cause me to have a speech problem if it isn't severe? My doctor does not know much about. He just told me there is no cure. Can somone recommend a good doctor? I live in Florida, between Orlando and Tampa. I cannot give my real name and city, I do not want to loose my job.

Florida (Sent Tuesday, June 24, 2008 6:11 AM)

I didn't get to see this series, but wish that I had. I have Lupus. It has completely changed my life. Some days, I am lucky to have two good hours to actually 'do' something. Neurontin has helped me to get some sleep, relieve some pain. I would like to see more research done to uncover the cause of autoimmune diseases, including looking at our water sources, food supply and additives, even the air we breathe, things used daily, like plastic products, etc. There has to be a cause for so much illness. Only when we know this can we begin to find cures and treat all autoimmune diseases with better results.

Lucille, Longview WA (Sent Wednesday, June 25, 2008 1:07 PM)

I am now dealing with the severe affects of Lupus (SLE) and undifferentiated connective tissue disorder. I am 39 years old and have dealt with numerous physicians who can only offer little help other than steroid therapy that involve numerous complications along with immune suppressing drugs also with side affects. I would like to see some progress with new treatment to help patients get some relief from this horrible disease. Look at the response just from this piece. I am also fighting with social security and long term disability coverage to the point that we are about to loose everything due to financial strain since I have not worked for a year. It's sad to see how many of us are suffering from this disease. Maybe more news coverage and donations for a cure could bring this to the forefront and help those suffering. Oprah, the Today Show etc.

Kimberly Main, Connecticut (Sent Thursday, June 26, 2008 3:12 PM)

Thank-You for putting the word out there about LUPUS.
I tested positive for lupus/MCTD over ten years ago.I have,Sjogrens,Scleroderma,raynauds...ect.
I went through the same thing,my doctors said it was ALL in my head,yes i quess some of it was...My mri showed punctate areas of abnormal signal noted in the subcortical white matter of the frontal lobes.
Any one that has LUPUS should get SSD !!! Why? Here are some reasons; Headaches,convulsions,seizures,chest pain, shortness of breath,stiff-necks,LUPUS lesions,dry skin,dry eye's,hair and nail loss, oral sores,FATIGUE,
pleurisy,pneumonia,joint pain/inflammation,muscle pain,cts,chronic cough, fever, night sweats,memory loss,vision loss, nausea,vomiting,diarrhea,kidney problems,loss of appetite,weight loss, swollen glands,easy bruising,edema swelling,butterfly rash,blood clots,anemia,arthritis,anxiety,depresion,hypothyroidim,hypokalemia,high blood presssure,photosenstitive...
LUPUS can and will attack ANY part of your body.

Lisa,West Virginia (Sent Monday, July 07, 2008 3:52 PM)

They tell me I have neuropathy - don't know how why or what to do about it. My feet feel like blocks of wood and have no feeling at times they are numb. Is this part of this strain of illnesses. The doctor said it is due to nerve damage???

Connie Brady, Marengo, IL 60152 (Sent Tuesday, July 08, 2008 7:28 PM)

Hi everyone I work adults with mulitbale disablities and I for one know someone who has Lupus and to be honest I was goingto be a donor however I was told that it will be too risky becuse she might not make it though the surgery so I feel for all of you my thoughts are with you lets find the cure to all these unknown causes.

natalie pintscher Joliet il (Sent Wednesday, July 09, 2008 9:59 PM)

Like Michelle Boynton I also have suffered from Hereditary Angioedema all my life. I really had a hard time in the military, as they had no clue about this disease. Have a long story, but only a short amount of space.

Ken Ortensie, San Antonio, Texas (Sent Saturday, August 09, 2008 12:48 AM)

Autoimmune diseases can be difficult to diagnose. Some people who carry that label do not have a disease even though they have severe symptoms. I suggest approaching such problems as assuming they are "puzzling symptoms" I am a retired physician but spent my professional life with such patients. see www.puzzlingsymptoms.com for altenate approaches to uncovering causes for such symptoms.

Clifton Meador, M.D. Nashville, TN (Sent Tuesday, September 09, 2008 10:39 AM)

About 10 months ago I started feeling discomfort at the base of my feet. Within a couple months this progressed to swelling, and pain so severe at the bottom of my feet it would take hours before I could put shoes on or walk normall. 4 months later, I was taken to the emergency room with pain so severe I could barely dial the numbers on a cellular phone. To this day, much like some of your other writers, all my blood works comes back as if I was 100% healthy. All possiblity of Lupus, RA, and Fibromalgyia have been eliminated. However, I was put on a small dose of prednisone. I have been able to elliviate the 96% of the pain with a combinatgion of 2.5mg of Prednisone, and alleve. However, I continue to search for the cause of what ails me. Does anyone have any idea what could be wrong?

Lisa Smith, Orlando, FL (Sent Monday, September 15, 2008 8:23 PM)

Dermatomyositis would be a good one to address also. I have had this for a very long time and it is also a auto immune disease. Thanks

Debra Pilot Rock Oregon (Sent Wednesday, October 01, 2008 5:05 PM)

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