Medical mysteries

Cheryl Lynch (Dallas, TX) — Mon, 12 May 2008 22:08:02 GMT

Please include the disease TTP in this weeks stories. This was a rare disease that is being now being diagonsed more. I have had this for almost 10 yrs. with no family history of this disease. there is not enough awareness or research on theis disease.

Thrombotic Thrombocytopenic Purpura

Medical mysteries

Becky, St. Louis Missouri — Mon, 12 May 2008 23:06:22 GMT

Though not making light of Lupus, this story didn't tell what a killer the disease can be. My niece was diagnosed with TTP at 11 and dead from Lupus just before her 19th birthday. A cure must be found, please donate to the Lupus Foundation of America.

Medical mysteries

Francesca Houstn, Texas — Mon, 12 May 2008 23:09:06 GMT

I would like to also see more information on RA (Rheumatoid Arthritis). I could truly relate to Jennifer Pearce's story because I too felt "crazy." I was always fighting upper respiratory infections, had severe joint pain and stiffness in the morning and a sensitivity to the sun. My ANA is negative, but my Rheumatoid Factor is in the 70s. After an infection and horrible scar resulting from a biopsy and numerous doctors (infectious and Rheumatology), I was finally given a diagnosis. I, like Jennifer, look perfectly healthy but agnonize inside, unable to get up after sitting on the floor to play with my young daughters.

Medical mysteries

Mark E. Michielsen, Virginia Beach, VA — Mon, 12 May 2008 23:19:46 GMT

Thank you for your research and coverage of Lupus. I recenty had to retire from the Marine Corps after 27 years of service and return home to take care of my family. My wife was diagnosed over ten years ago and it's been a roller coster ride ever since. My wife has been told at times that she is stressed out. Usually that happens when a doctor just doesn't understand the disease. There are not enough information out there. I took down Dr. Stephen Hauser information. I wish we had an expert more local we could trust. I will be watching this series and look forward to gaining more information. Thank you again for bringing Lupus to a hightened awareness.

Medical mysteries

vanessa lopez, norfolk, virginia — Mon, 12 May 2008 23:21:09 GMT

I have been diaganosed with orthostatic hypotension supposedly caused by peripheral neuropathy with an unknown cause. I have had many episodes of passing out that led up to this. MRI shows some white matter leisons. Family history of lupus, lou gehrig's disease and parkinsons, but so far just a dead end. Any suggestions on a direction. I have been tested for diabetes and rare auto immune diseases. I can't drive or work at this point and it's been very frustrating for me and my family. I have been to neurologists and cardiologists and they have just been spinning their wheels. Please help me.

Medical mysteries

Cathy Cott, Tahlequah, OK — Mon, 12 May 2008 23:22:45 GMT

Thank you for bringing this mysterious and individualized disease into the public eye. I have been dealing with this strange disease for 20 years. No medications really help. Knowing "my lupus", what triggers flares for me, and listening to my body when it starts sending me the warning signs is all I can do at this point. Best of luck to Jennifer Pearce and all the others out there moving forward in "their lupus".

Medical mysteries

Denise Meehan, New York, NY — Mon, 12 May 2008 23:26:37 GMT

Lupus can also occur in children, and there is a higher incidence in women of color: African-American, Hispanic and Native American. My closest friend's daughter passed away in February from complications related to Lupus. Your piece focussed on someone who's symptoms are managed right now, and that is a blessing. Not everyone is that fortunate.

Thank you for raising Lupus awareness !

Medical mysteries

Lynn Surprenant, Brown City MI — Mon, 12 May 2008 23:37:52 GMT

Thank you for covering this disease. I had been complaining for over a year that something was wrong. For months I felt like I was being treated as though I was a hypochondriac. I persisted and finally received the blood tests in September 07 that confirmed I had Lupus and also Sjogren's Syndrome. Also I had breast cancer in 2005 and had a very hard time healing from a lumpectomy. I later found out that the lupus has caused peripheral neuropathy. Finaly though, I am on a combination of drugs that make my days easier to tolerate. It's a trade off of feeling really tired or really sore but I have more good days now and my family appreciates that.

Medical mysteries

Michelle Boynton — Mon, 12 May 2008 23:39:57 GMT

I am so glad to see this series. I have battled Hereditary Angioedema all my life. It is a rare C1-autoimmune disease with a very high mortality rate. The allergic response goes haywire and turns on the person with it.Death usually comes with airway asphixiation...but it too was all in my head! My sister has Lupus and my mother died from complications from Rheumatoid Arthritis at 62. For more info you can go to www.haea.org and thank you so much for doing this series.

Medical mysteries

Manuela Smith — Tue, 13 May 2008 00:08:59 GMT

I suffer from RSD (Reflex Sympathetic Dystrophy) which is a rare nerve disease. For the last 6 months my joints and muscles are hurting to a point where I can hardly walk. All blood tests came back negative and my doctor gave up. Any suggestions? Should I be tested for Lupus?

Medical mysteries

J Sherman — Tue, 13 May 2008 01:00:10 GMT

It was a big surprise to catch this feature! Autoimmune diseases are so often mis-diagnosed and ignored. There are so many of them as well! Had I not been diagnosed and treated for my own condition, I would be in a wheelchair now. I am lucky, but I know that for one of me, a lucky one, there are likely ten other people in serious pain and likely disability out there because of inconsistent diagnosis practices. Or laziness? I don't know, but I hurt for each person trying to find out about why they hurt.

Medical mysteries

Carolyn Turner, Sacramento, CA — Tue, 13 May 2008 01:17:16 GMT

Thsnk you for your insightful resport. I am a critical care RN and I see these autoimmunie diseases very frequently. The symptoms are devastating to the lives of autoimmune sufferers.

Medical mysteries

Chana Meddin, Bellingham, WA — Tue, 13 May 2008 01:31:24 GMT

Please consider profiling fibromyalgia/chronic fatigue syndrome. I have been ill since 1986, with a dizzying array of disabling symptoms, yet I look healthy. The symptoms seem disparate, yet people (primarily women) of all ages, walks of life, and ethnicities exhibit astonishingly similar symptoms which defy diagnosis and explanation. And few people believe we are ill. Thanks!

Medical mysteries

MG., Modesto, CA — Tue, 13 May 2008 01:32:35 GMT

Thank you SO much for highlighting lupus as a "mystery illness". I have had lupus for over 15 years now and am STILL fighting with doctors over treatment. I am also fighting with Social Security for disability because I can no longer work due to fatigue and pain. I have been repeatedly told that I don't "look ill" therefore I must be healthy -- this even from doctors. Having lupus has been devastating for me. I have a graduate education, but at times I cannot think straight or even track a conversation. I get fatigued at the slightest thing. At times I am in such pain that I can only lay in bed and cry. Yet I am told I am just "being dramatic" and that really if I wanted to, I could go to work. Please, please, if you know someone with this illness have some compassion and understanding for the demoralizing effects having a hidden disability and "mystery" illness can have on them.

Medical mysteries

Laura Pitetti, Buxton, N.C — Tue, 13 May 2008 01:43:29 GMT

I was glad to see that Lupus is making the the news. I'm 41 and I have suffered with Lupus for 20 years. We can only hope that more research of this monster disease is in the works. Lupus is a very painful disease. My son is what makes me want to fight this monster. God blessed me with JB 12 years ago. My heart is with all who suffers from a deadly diseae.

Medical mysteries

John Miller, Penna. — Tue, 13 May 2008 01:56:29 GMT

I am a male who was diagnosed one year ago with an autoimmune disease called Relapsing Polychondritis (RP). RP is a severe, episodic, and progressive inflammatory condition involving cartilaginous structures, predominantly those of the ears, nose, and bronchial tree. Other affected structures may include the eyes, cardiovascular system, peripheral joints, skin, middle and inner ear, and Central Nervous System. For me RP's main attack has been my ears (inner & outer) causing sharp pain and vertigo. I have so many people tell me that I look great and yet, I feel terrible on the inside. Many people just don't understand. There can be so much pain. I, too have wondered if I am "crazy." When I feel good, I can't imagine that I feel so bad much of the time. And the medicines have not helped yet. Quite often they make me feel much worse. I take the medicines because I know how destructive RP can be. I find that positive thought helps me get through the toughest times, not to mention each day. Best of luck to everyone with an autoimmenu disease!

Medical mysteries

David Rivera — Tue, 13 May 2008 02:20:31 GMT

The issue of Lupus among men has been in the dark, since it affects such a small percentage of the male population and it affects women for the most part. For men like me who had been misdiagnosed for many years the ramifications and stakes are higher. It carries a stigma since we are supposed to "tough it out", and it's a "women thing". As an Air Force retired individual I was, many times, labeled as a malingerer, misdiagnosed and treated as having severe headaches, a bad case of the flu, or muscle aches, and treated with motrin. I have had 7 or 8 cases of aseptic meningitis, not to mention the possibility of several misdiagnoses without a spinal tap to confirm it. These were also misdiagnosed initially as bad cases of the flu, but correctly diagnosed after a spinal tap. After retirement I was diagnosed with lupus by the Chief of rheumatology at the Univ of Maryland. He was able to easily come to the diagnosis since he was familiar with this condition as prevalent among hispanics in particular Puerto Rican men.
Maybe you, Mr Basell, or somebody out there with influence, could present a different angle, particularly the I am bringing now, to NBC's large audience.
Thanks in adcance; I greatly enjoy your health reports. Dave R

Medical mysteries

Tomisa Starr, Sacramento, CA. — Tue, 13 May 2008 02:24:56 GMT

Please do a segment on Scleroderma. Scleroderma is another one of the "almost-invisible" autoimmune diseases. Like Lupus, it affects the skin, internal organs, and joints. "Scleroderma" means "hard skin", and it has been called "the disease that turns people to stone". In Scleroderma, excess collagen deposits occur in organs, skin, etc., causing scar tissue to form. I was misdiagnosed with chronic fatigue syndrome, "new mother's fatigue" and hypochondria, before I was diagnosed with Scleroderma in 1993. Although Caucasian men can have Scleroderma,it is more common among African-American women (I am one).Native American and Caucasian women also can develop it. It has been my experience (until I was diagnosed) that Black women with Scleroderma are more likely to be misdiagnosed or their complaints not taken seriously. I had been seen by various white dermatologists in my HMO, but they hardly touched me during my examinations. I was eventually diagnosed by an Asian dermatologist. She actually touched me, and felt my skin. Because other dermatologists had misdiagnosed me repeatedly, they were called in to actually feel my skin and feel how thick and hard it was. They also took pictures of me to teach other doctors to recognize the disease.

I am glad that NBC is reporting on these "orphan" auto-immune disorders.

Medical mysteries

Debra Williams — Tue, 13 May 2008 02:41:58 GMT

I thank God for this series. I have been diagnose with Fibromyalgia[FMS]for the past 5 years. there is no know cure as of this day and there are over 8 million women and men[few] that are dealing with this illness. There is very little any Dr. can do. The muscles and joints become so stiff and painful and the fatigue can be overwhelming. It cannot be diagnosed by test [blood or x-rays]and does not affect the physical appearance. After attending several Doctor's and Specialist and all the test came back negative, only then was it discovered. My heart goes out toward the children that have been diagnosed with this illness. I feel at times that I am having an "outer body experience". I pray for a cure for all of us that have these different.difficult and poorly understood condition.
Thank you Mr. Robert Bazell for speaking on behalf of us all. From my understanding those that have been diagnosed with Lupus and MS have FMS in some cases. Thank you once again.

Medical mysteries

Jacqueline Evans, Odenton, MD — Tue, 13 May 2008 04:44:16 GMT

As someone who has lived with Lupus for almost 30 years, I was SO happy to see if featured on your program. It took a great deal of persistence on my part to get a diagnosis. There have been many ups and downs. I was on steroids for more than 10 years and a variety of other medications. I have been told to my face that I didn't look sick & so I asked "how do you want me to look?" Pain is something I live wiht every single day. About six years ago, I was diagnosed with breast cancer; had a mastectomy & chemo. And yet I keep on going-I'm not sure what gives me the will. It has not been easy-there are some days when I don't even feel like getting out of bed, but I do. It's commendable that you have chosen to highlight diseases like this & not wait until someone famous announces their diagnosis.

Medical mysteries

Kristie, Sudbury, MA — Tue, 13 May 2008 12:37:22 GMT

Thank you for featuring an auto immune disease on last night's news. I was diagnosed with Sjogren's Syndrome in 2002 and struggle with it daily. My eyes are so dry that I have not shed a tear since 2001, and are increasingly sensitive to light and touch. They "ache" daily. Additionally, I cannot eat a wide variety of foods since my mouth is too dry to process them. The disease has not only affected my physical health, but my mental health as well. I am very self conscious about talking to people since my eyes often have visible residue that cannot be washed away. Once a direct eye contact type of person, I tend to shy away from it now. I also do not like to eat in front of others since it is difficult to move food around in my mouth, hence making chewing, talking and smiling aferwards potentially embarassing. Since it is considered a relatively benign condition there is not a lot of research dedicated to this specific disease. As has ben mentioned in the other blogs, it is difficult to look great on the outside and feel lousy on the inside. Thanks again for bringing autoimmune diseases into the news. Best of luck to those who suffer from them.

Medical mysteries

Kimberly Cowern, Milford, Pennsylvania — Tue, 13 May 2008 13:00:03 GMT

Thank you for highlighting these conditions. I echo an earlier comment with my own plea to please consider profiling fibromyalgia. It took me six years to be diagnosed. I feel like I have been robbed of the life that I always dreamed of having. I would love to know if there are any advances being made in research on new treatments, and hopefully one day, a cure. Thank you.

Medical mysteries

Judy Zabriskie, Ashland, VA — Tue, 13 May 2008 13:37:28 GMT

I so enjoyed your coverage of lupus last night. It was precise, unbiased and did not use the usual "scare tactics" usually portrayed in cases such as these. I suffer from multiple sclerosis and look forward with anticipation to your coverage of this miserable, yet "silent" disease. Good information given to the public keeps them aware and not fearful of we who suffer from these diseases.

Medical mysteries

Andrea Peirce, New York, NY — Tue, 13 May 2008 14:08:42 GMT

Great coverage on lupus, which is such a difficult and discouraging disease. I would want to add that a lot of exciting research is taking place with lupus and other autoimmune diseases as well--and that there is a lot that people with lupus can actually safely do to help find better treatments and a cure. The Lupus Research Institute, a nonprofit organization doing innovative research in lupus, is making breakthroughs in figuring out what goes wrong in the immune system of people with lupus, and what might be done about it. LupusTrials.org is a website we started along with LupusResearchInstitute.org to tell people with lupus about clinical trials happening in lupus. Once scientists figure out how and why the immune system sometimes turns on a person's own body in lupus, they'll also know a lot more about autoimmunity as a whole.

Medical mysteries

Michael C Weir, Tustin, Ca — Tue, 13 May 2008 15:12:57 GMT

Western Medicine admits that it has no cure for Lupus. I think it is time to investigate other healing modalities, specifically Aurvedic Medicine. Their prescription for most degenerative dis-eases is to fast, to get rid of toxins. For more information use search in Youtube. type in 'Cure for Lupus'.
I think it is time for Western Medicine to take a hard, scientific look at this claim. Do the the double blind studies.
If you are a suffering from this disease now, test out fasting for yourself, while waiting for science to catch up.

Medical mysteries

Lynne Kinney, Lakewood CO — Tue, 13 May 2008 15:14:11 GMT

Thank you for your coverage on Lupus last evening. Finally, it was refreshing to see some coverage of this disease. I have had lupus for 25 years - and just in the past 3 years was I formally diagnosed. The treatment is vicious, and the disease at times cruel. Like all other lupus patients, I worry daily about the damage being done to my vital organs. Thank you again for your coverage !

Medical mysteries

Shantella Benson, San Pedro, CA — Tue, 13 May 2008 15:39:06 GMT

Please consider adding fibromyalgia. There are many people who just think sufferers are complaining or looking for an excuse not to do something when you say you're tired or hurting.

Medical mysteries

Cindy Mullins, Lubbock, Texas — Tue, 13 May 2008 15:46:37 GMT

Just stumbled on this information while doing research as I was just diagnosed last week with lupus. Finally a reason for not feeling well, while looking good and trying to stay active as a single self employed 42 yr old caucasion female. Skin rashes and pain in joints and muscle tissue, fatigue and stress often will lead me into episodes of migraine. Vertigo, visual disturbances and tinitis are more often than not a part of my daily routine. So... I guess I will now welcome myself to the rollercoaster ride!!! Thank you for all of the helpful comments and information!!

Medical mysteries

William Davis, Woodbridge, VA — Tue, 13 May 2008 17:21:17 GMT

Thank you so much for highlighting the devastating disease known as lupus. I know I have found a lot of assistance from the LFA's monthly Webchats, and their message boards. I would recommend that anyone, whether recently diagnosed, or you have been living with lupus for a long time, visit the lupus.org Website to see all the great resources they have. Thanks again for putting a spotlight on this disease.

Medical mysteries

Elinor Mullin, Fayetteville, Arkansas — Tue, 13 May 2008 17:26:04 GMT

I would like to see something done on Turner's Syndrome. This is a chromosomal disorder that affects females. My little girl has this condition.
We only found out when she was 14 years old.
She has to see seven different specialists.
Autoimmune disorders can go along with Turner's Syndrome. There are women walking around with this and don't even know they have TS until they start to conceive. Please help us to get the word out about Turner's Syndrome ! 1 in 3 thousand !
These girls are "walking miracles" 99.9% of them are spontaneously aborted. Doctors are diagnosing in-utreo and are recommended selective abortion. My little girl who is 15 wants the world to know that it is okay to be blessed with a Turner girl !

Medical mysteries

Maggi McQueen, St. Petersburg, FL — Tue, 13 May 2008 18:21:42 GMT

As a lupus patient and as Chairman of the Board of the Lupus Foundation of America Greater Florida Chapter I cannot thank you enough for doing a segment on lupus. The more awareness that can be raised the more interest there will be in doing research to find the causes and cure. On behalf of the almost 90,000 Floridians with lupus thank you for giving the disease the coverage it deserves.

Medical mysteries

Shelly Kempster, Sugar Land, TX — Tue, 13 May 2008 18:28:28 GMT

I was diagnosed in 2006 with Rheumatoid Arthritis at age 37. No family history. It would be an interesting story angle to also detail how insurance companies will not cover potentially helpful alternative treatments which in some cases have better results than our "wonderful" health care providers. It is difficult when first diagnosed to get all the options available to you. I had to research it myself and argue with my doctors. Luckily, I was VERY quickly diagnosed, so I'm thankful for that. I do, however, resent doctors who won't open their minds to things like the Antibiotic Protocol.

Medical mysteries

Marvella McElya, Dallas, TX — Tue, 13 May 2008 19:43:04 GMT

It is a relief to have the spectrum of auto-immune diseases covered in a national forum. I was diagnosed with Ankylosing Spondylitis almost 2 years ago but it took much longer than that to find the answer. AS is basically a "cousin" to Rheumatoid Arthritis". It is by definition "arthritis of the spine" but it is so much more than that. It effects all my joints, ligaments, ribs, eyes, skin, energy, etc. I try to keep a healthy perspective knowing that it isn't cancer and shouldn't kill me but many days I do feel like dying because of the chronic pain and significant effect on my life with my husband and three young children. There are new treatments but so far none have provided me any relief so we just keep on praying and looking for a better answer.

Medical mysteries

Jane — Tue, 13 May 2008 20:01:19 GMT

Please take another look at systemic lupus especially among male children. It is highly misunderstood and very dangerous as children can experience deadly organ damage and much more aggressive symptoms. My son was misdiagnosed and almost died before the right lab tests indicated lupus nephritis - one of the most serious types.

Medical mysteries

Lori Belvedresi, Pine Bluff, Arkansas — Tue, 13 May 2008 20:11:40 GMT

I have had lupus (SLE) for 15 years and have experienced the disbelief from friends and coworkers that I was "making it up". More understanding and knowledge of the disease is essential to developing better treatments and possibly a cure. It also helps lupus patients feel like someone actually understands what they're going through. We are not alone!

Medical mysteries

Claudia Seskar, Divide, CO — Tue, 13 May 2008 20:45:32 GMT

I was diagnosed w/Lupus 18 months ago. It took me a while to understand the condition (still a work in progress), but my employer doesn't grasp it yet! Some days it is so hard to get out of bed. You never know where it is going to strike next time you have a flare. I have had symptoms since the early 80's but just blew them off because: 1. I hate going to the Dr. & 2. I looked fine. The condition reached a point in 2006 where I finally had to see someone. After what seemed like pints of blood drawn and too many specialists and test to mention. Lots of $ later I was diagnosed. I have decided to just take charge of my own care & treatment. No more doctors! No more pills! Thank you for your segment on the news last night.

Medical mysteries

Rachel Ariela Fishman, Cleveland, OH. — Tue, 13 May 2008 22:51:48 GMT

I identify with the frustrations of living with this disease. However,in my case, I find it may be even more difficult.I have been diagnosed with an undifferentiated connective tissue disease or mixed autoimmune disease. According to the doctors, these terms are synonymous. This means I have an autoimmune disease but they have no idea what it is. It has the hallmark symptoms of Rhumatoid Arthritis or Lupus but not enough of them to be diagnosed. It is evident that the medical community does not know much about the diseases that have been termed let alone the ones they cannot even define. It might be interesting to find out how many women have been diagnosed with undifferentiated autoimmune disease.

Medical mysteries

Samantha H., Gainesville, FL — Tue, 13 May 2008 23:01:31 GMT

I am a teenager and in december I was diagnosed with juvenille rheumatoid arthritis. It is just as bad as rheumatoid arthritis, if not worse. I am surprised you don't address this. I have to deal with injections, prejudices at school, uninformed teachers, confused friends, homework troubles (due to increased inflammation in my wrist), not being able to play my favorite sports, run, walk, etc. etc. I am very shocked, to say the least, that you do not discuss this. Why not? Just curious. It is a major problem in America among kids. Not just teenagers but also kids as young as two years old.

Medical mysteries

Sharon Young, Santa Fe, NM — Tue, 13 May 2008 23:10:29 GMT

As everyone else, thank you so much for this segment on Lupus. It has taken 43 years to get the diagnosis of Systemic Lupus as I finally became so ill and lost my voice for over 3 years now. It is hard for family and friends to understand when one day you are doing well and the next day or hours you have taken a down hill turn. Hopefully your piece will bring new awareness as well as funding for research. Maybe now people will know that we are not "making it up" and that "its all in your head".
Sharon/New Mexico

Medical mysteries

Bill in Keizer, Oregon — Tue, 13 May 2008 23:46:14 GMT

I sure hope that the question of WHY the traditional medical establishment takes so long (more than 7 years on average in most cases) to diagnose autoimmune disorders such as lupus, celiac, RA... is examined, even if no good answer is arrived at. I think it mostly has to do with Doctor's training, but also with insurance reimbursement.

Also, didn't Charles Kuralt (sp?) have lupus?

Medical mysteries

Karen, Salina, Ks — Wed, 14 May 2008 02:45:03 GMT

My daughter diagnosed herself in Sept.2002 at the age of 14. She was reading a book about a teenage girl with lupus. My daughter recognized the symptoms she herself was feeling. She told me she thought she had lupus. She was diagnosed by rheumatologist one month later. If she hadn't been so in tune with her body she might not have recognized the symptoms. We almost lost her in the June of 2003. All her organs became involved. She spent 14 days in hospital, then months of chemo.
She is now 20 and doing good. She was just denied disability, because she looks fine. We were glad to see the program feature lupus. good luck to all who share this terrible disease and other autoimmune diseases.

Medical mysteries

June Gnass, Durham, CA — Wed, 14 May 2008 02:45:04 GMT

I would like to submit comments regarding the 2 reports on autoimmune disease and women. I am disappointed that no mention of diet/lifestyle were mentioned in regards to gene expession of those at risk. Have you reviewed the connection with low-deficient levels of vitamin D? How about the gluten connection and gluten sensitivity? An excellent rescource for would be the VITAMIN D COUNCIL (check out the excellent write up in the Toronoto Globle earlier this year) and Dr. Rodney Ford (Gluten Sensitivity) as an experienced pediatric gastroentrologist diagnosing and treating gluten sensitivity diseases. It appears that the drup industry has the upper hand in how these diseases are treated. Too many drug related commercials are aired during these stories. My guess would be that a drug company is marketing one of these drugs for treatment. I am a well educated & experienced dietitiran/nutritionist that has seen improvement with these types of conditions with nutrition & lifestyle management. It would be much appreciated if a story were done on the prevalence of vitamin D deficiency in this country and health issues than can occur as a result based on NEW RESEARCH.

Medical mysteries

Pauline Garcia, Sacramento, CA — Wed, 14 May 2008 04:07:06 GMT

I am a 48 year old Hispanic woman who has battled Lupus (SLE) for 17 1/2 years. I was diagnosed during my first pregnancy, third trimester. My doctor thought I miscarried as he could not detect a fetal heartbeat during a routine appt. I was hospitalized and they were able to detect a faint heartbeat. My son (fetus) had "congential heartblock". He was born with a planned C-section and was to immediately have a pace-maker inserted at birth. Doctors decided to hold off on surgery for a couple of days and monitor his heart. He remained in Neo-Natal ICU for 4 days. He came out of heartblock after 4 grueling days. He was born 17 1/2 years ago and is healthly today. He's my miracle child. I still battle Lupus and had to Disability Retire from my career of 23 years. Lupus was taking control of my body. Everyday I wake up I give thanks to the Lord for giving me another day. I became a Lupus Awareness Advocate and participated at Health Fairs to help educate anyone that needed information on this disease. I have really slowed down and face other medical challenges....Rheumatoid & Osteo Arthiritis, Raynaulds, Fibromylagia and Restless Leg Syndrome. My one complaint about this disease is there really needs to be more AWARENESS out there. It's get's old when you constantly hear "But, you don't look sick".... my theory for all of those that do not have this disease...walk in our shoes for a day and get back to us. I'm just thankful for each day that I have.

Medical mysteries

Sally, Los Angeles, CA — Wed, 14 May 2008 04:18:35 GMT

I can't thank you enough for this series. I am an energetic woman who has suffered from Lupus for over 10 years. I was diagnosed at 27, right when i was discovering myself and my career path. Lupus derailed me and it has taken me a very long time to get on a course that i am happy with. No one seems to care about this disease because it is not visible in the ways that so many other diseases are - we need help from the media (Oprah are you listening?) to raise awareness to find a cure. there have been very few advancements in the last 50 years and most of us with Lupus do not have the energy (literally) to organize...we need help to find a cure!! Thank you for doing this piece - it was the best one I had seen on the subject.

Medical mysteries

Glenda — Wed, 14 May 2008 05:35:22 GMT

Are you going to do a similar segment about diseases that affect primarily men? Men's health issues get no coverage in the media despite the fact that their average life span is significantly shorter than ours and they suffer from a number of diseases that hit them disproportionately. Please consider improving your coverage of men's health issues.

Medical mysteries

Paula Ferris, Orlando, FL — Wed, 14 May 2008 18:09:15 GMT

I am a 55 yo female, diagnosed with Polymyositis in 2002...now have fibromyalgia as well. Would love to see a segment regarding the immune disorder, Polymyositis, which is so painful and hard to diagnose and manage.

Medical mysteries

Melinda Cooper-Polakoff, Calabasas, CA — Wed, 14 May 2008 18:28:55 GMT

Has there been any further research or use of the treatment used by Dr. Thomas Brown of the Washington, DC area for nearly the last 40 years of his career? He successfully treated patients with RA, scleroderma, Sjogren's, etc with Tetracycline.
It's really a shame that the majority of RA sufferers are sent up the ladder of medications with no real long-term improvements. The book "The Road Back" lays out the case for therapeutic antibiotic therapy with this category of devastating diseases. Unfortunately most people will only try what is given to them.
We have 2 relatives with SLE who go the standard route with steroids, etc. Also, these diseases are so serious and it is sad that the uninformed among us are quick to judge and proclaim "It's all in your head."

Medical mysteries

susie, Boston Ma — Wed, 14 May 2008 22:27:18 GMT

Everyone should check out the Antibiotic Protocol at roadback.org It works, it's safe and I'm living proof!

Medical mysteries

DORIS FIGUEROA,204 EVERGREEN PL SW WINTER HAVEN FL. 33880 — Wed, 14 May 2008 23:58:35 GMT

HI MY NAME IS DORIS FIGUEROA, AND YES I HAVE LUPUS TO ABOUT FOUR YEARS NOW, I HOPE SOMEBODY READ THIS AND BRING ME THIS INFORMATION IN SPANISH IS VERY IMPORTANT TO ME. THANKS.

Medical mysteries

Nancy Crabbe, San Carlos, CA — Thu, 15 May 2008 00:25:50 GMT

I just want to add my thanks to you for this series on autoimmune disorders. I have Sjogren's Syndrome -- even lesser known than lupus -- along with mild rheumatoid arthritis. A number of people I know with Sjogren's have lupus and/or other autoimmune disorders. Sjogren's causes severe dry eyes, dry mouth, and other problems. Think of having to drink liquid with nearly every bite of food; and consider what it would be like to have extremely dry eyes on a continuing basis.
Unlike some others who have written,I do have a familial connection with my mother -- same combination as mine -- plus my sister, who has Hashimoto's thyroiditis.
The Sjogren's Foundation has done much to support local support groups, but its efforts are not well funded. Thanks for getting the word out about these diseases.

Medical mysteries

Andrea Schmith, Port Charlotte, Florida — Thu, 15 May 2008 00:53:41 GMT

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.

Medical mysteries

Celina, Painesville OH — Thu, 15 May 2008 03:06:35 GMT

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.

Medical mysteries

Barbar A. Bruce, Bellmont, IL — Thu, 15 May 2008 03:50:37 GMT

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.

Medical mysteries

K. A, Los Angeles, Ca — Thu, 15 May 2008 04:22:23 GMT

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!

Medical mysteries

Marilyn Sassman, Blue Eye, Missouri — Thu, 15 May 2008 11:34:15 GMT

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.

Medical mysteries

H Ransom,Alabama — Thu, 15 May 2008 13:56:25 GMT

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.

Medical mysteries

Maura McCurdy — Thu, 15 May 2008 19:26:36 GMT

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

Medical mysteries

Steven Taylor, Bethesda, Maryland — Thu, 15 May 2008 20:59:32 GMT

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.

Medical mysteries

Kathy Walters Modesto CA — Thu, 15 May 2008 22:22:42 GMT

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.

Medical mysteries

Barbara Scott, Harlan, IA — Thu, 15 May 2008 23:06:25 GMT

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.

Medical mysteries

Maria E. Posada, St. Charles, IL — Fri, 16 May 2008 18:24:52 GMT

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!

Medical mysteries

Dani, Atlanta, GA — Sun, 18 May 2008 15:10:02 GMT

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

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Josie Fuller , Palmdale, Ca. — Mon, 19 May 2008 04:57:55 GMT

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

Medical mysteries

Lisa,Wawick,RI — Tue, 20 May 2008 19:53:40 GMT

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

Medical mysteries

Juliet Horton — Wed, 21 May 2008 09:14:29 GMT

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.

Medical mysteries

Hilary Wilson, Brooklyn,NY — Wed, 21 May 2008 13:28:54 GMT

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.

Medical mysteries

Karla — Sun, 25 May 2008 22:23:15 GMT

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.

Medical mysteries

Tom Welsh, Silver Spring, Maryland — Mon, 26 May 2008 09:26:19 GMT

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.

Medical mysteries

Christine Henry, Tustin Ranch, Ca. — Wed, 28 May 2008 18:32:01 GMT

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.

Medical mysteries

Jenny Clay — Wed, 28 May 2008 22:31:23 GMT

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!!!

Medical mysteries

Barbara, Crawfordville, FL — Wed, 28 May 2008 23:54:34 GMT

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.

Medical mysteries

Coleen Shelton Ct. — Thu, 29 May 2008 01:23:12 GMT

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

Medical mysteries

P.C. M., Fremont, Ca — Tue, 03 Jun 2008 23:28:29 GMT

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.

Medical mysteries

Wendy Robinson — Wed, 04 Jun 2008 16:09:21 GMT

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!

Medical mysteries

Jill Barnes, Loveland, OH — Wed, 04 Jun 2008 22:25:16 GMT

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!

Medical mysteries

kathleen muthig — Thu, 05 Jun 2008 14:52:42 GMT

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.

Medical mysteries

Basil Ward, St. Michael, Barbados — Thu, 05 Jun 2008 16:22:24 GMT

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.

Medical mysteries

Basil Ward, St. Michael, Barbados — Thu, 05 Jun 2008 16:28:56 GMT

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Dennis Martinez — Fri, 06 Jun 2008 03:21:50 GMT

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.

Medical mysteries

Estela B. Gonzales, San Antonio, Texas — Sat, 07 Jun 2008 19:33:06 GMT

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.

Medical mysteries

Bernadette Gonzales, Corpus Christi, Tx — Tue, 10 Jun 2008 19:08:42 GMT

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.

Medical mysteries

April Mangum — Wed, 11 Jun 2008 12:17:52 GMT

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!

Medical mysteries

Sharon Abrams, Brunswick, Maryland — Mon, 16 Jun 2008 20:02:01 GMT

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.

Medical mysteries

SHARMANE MCLEAN, MANHATTAN,NEWYORK — Mon, 16 Jun 2008 21:32:10 GMT

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

Medical mysteries

Suzanne Rodriguez Alice TX — Mon, 16 Jun 2008 23:12:20 GMT

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.

Medical mysteries

Patty, Hot Springs, AR — Wed, 18 Jun 2008 10:46:12 GMT

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!

Medical mysteries

Beth Schroeder, Knightdale, NC — Thu, 19 Jun 2008 14:07:40 GMT

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.

Medical mysteries

Kimberly, Romulus, MI — Thu, 19 Jun 2008 17:02:26 GMT

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.

Medical mysteries

Vicki — Mon, 23 Jun 2008 13:57:41 GMT

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

Medical mysteries

Jacki, Spfld IL — Mon, 23 Jun 2008 15:42:42 GMT

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.

Medical mysteries

Florida — Tue, 24 Jun 2008 10:11:15 GMT

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.

Medical mysteries

Lucille, Longview WA — Wed, 25 Jun 2008 17:07:32 GMT

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.

Medical mysteries

Kimberly Main, Connecticut — Thu, 26 Jun 2008 19:12:13 GMT

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.

Medical mysteries

Lisa,West Virginia — Mon, 07 Jul 2008 19:52:30 GMT

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.

Medical mysteries

Connie Brady, Marengo, IL 60152 — Tue, 08 Jul 2008 23:28:37 GMT

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???

Medical mysteries

natalie pintscher Joliet il — Thu, 10 Jul 2008 01:59:18 GMT

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.

Medical mysteries

Ken Ortensie, San Antonio, Texas — Sat, 09 Aug 2008 04:48:09 GMT

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.

Medical mysteries

Clifton Meador, M.D. Nashville, TN — Tue, 09 Sep 2008 14:39:31 GMT

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.

Medical mysteries

Lisa Smith, Orlando, FL — Tue, 16 Sep 2008 00:23:18 GMT

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?

Medical mysteries

Debra Pilot Rock Oregon — Wed, 01 Oct 2008 21:05:45 GMT

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

Medical mysteries

Tessie Gomez Pueblo, colorado — Mon, 26 Jan 2009 18:49:00 GMT

I also missed the special on autoimmune disease's, but would also like to see it. A year ago I was diagnosed with fibromyalgia, after numerous tests, MRI's, labs etc.I also was told(before the diagnosis) all test were negative and it was all in my head. Later I was diagnosed with hypothroidism and with having a seizure disorder,I am the first in my(very large)family to have any of these types of problems.I'm doing as much research as I can get my hands on. Self education and persistance with (all) Dr.s is whats been keeping me going, as well as great support from my husband and prayer.I am still looking for a good Dr. and hope the research and awareness for autoimmune disease's continues to grow and expand to help those of us in need of answers and relief. My prayers are also with all of those with these disease's that affect thier everyday lives and those around them!GOD BLESS!

Medical mysteries

Denise, Houston TX — Sat, 28 Feb 2009 14:16:48 GMT

I do wish that you would do another show on Medical Mysteries autoimmune disorders. I have two kids and one has psoriasis and the other one seems to have an autoimmune disorder but after 5 years the doctors still cannot get a diagnosis. About every 6 months to a year she developes blood clots. She has high inflammatory markers. She has been on warafin and/or lovonox since 2004 but continues to develop clots anyway. I am desperate for some help and recognition.

Medical mysteries

Frances Leyro Ft champbell — Tue, 03 Mar 2009 18:15:24 GMT

I have Lupus for a shpt 1 close to 2 now and am glad they had a show on it can any show me where i can watch in on online i missed it

Medical mysteries

Linda Spears, Stanford, Kentucky — Thu, 26 Mar 2009 23:20:17 GMT

I wanted to comment on a news report you did on Alzheimer's disease. You had a test done and revealed the results on your show. Please could you give more information about this particular test and how someone can get the same test done? My mother had alzheimer's disease. You also named several advocates for this disease awareness in the celebratities, how do I find out this info also? Thank you.

Medical mysteries

Nermeen Kassem, Cairo, Egypt — Thu, 16 Apr 2009 15:51:17 GMT

hi, my cousin is 28 years old , she had 2 comas and we donnt know where or why is this happening to her,, we have no medical history in the family related to what is happening to her ,, im sending this so if any doctor saw it and if i can reach anyone who i can ask or talk to about this case please let me know ,, thank you ..

Medical mysteries

Kay St Louis, Mo — Tue, 30 Jun 2009 15:55:48 GMT

Hopefully ALS will soon move forward towards a cure. It's a horrible disease, as many know. I'm happy major league baseball is stepping up to the plate this 4th of July weekend with its awareness program!!! Go Cardinals

Medical mysteries

guss anton — Thu, 17 Sep 2009 17:28:19 GMT

I am learning to so bear with I saw a man on the show who his wife was paralyed i could help allieate some pain their is some help.Can i contact him?