Months of experiencing shortness of breath and numerous doctors telling me my lungs, heart and oxygen level was perfect left me wondering about my sanity until i realized through INOD that there are thousands of people/patients out there with no real diagnosis nor help with symptoms. I quickly learned if it doesnt show up in a test and you a a female, you are considered "emotional". Until i experienced this, I really believed doctors always found out what was wrong even if it wasnt something they could heal. Now i know differently. Learning there are others experiencing this frustration helped me understand i was still a worthly individual, could make changes and adjustments in my thinking and my life and still have something to give and a reason to live. Marianne was an exceptional individual. Smart, savy and not willing to allow the medical field tell her she was not experiencing her symptoms!
In Need of Diagnosis, Inc., (INOD) and Marianne Genetti serve as the voice for thousands around the country who are suffering from undiangnosed illness. The support, empathy, and understanding along with information as to resources that may be of help are outstanding with this organization.
I suffer from a variety of symptoms and for years was misdiagnosed or labeled with a disease that allowed the doctors and insurance companies to process my claims. Now without insurance and with the "label" attached it is so difficult to get a new policy. The cost of my care is a roller coaster some months I am symptom free or close to it. Other months it is a series of long, painful days and nights.
Marianne understood this and provide reference material that provided assistance in managing those rough times. Knowing that INOD is there provides me with hope that one day the true answer will come and I will be normal again.
Most people don,t have to spend years looking for a diagnosis and the appropriate help that comes with knowing what is wrong. Unfortunately I have been searching for answers for many years now. INOD hasn't gotten me in touch with anyone that has helped me but they are concerned and responsive. Maybe if they were given more publicity and acknowledgement more people like myself might find some answers!
My husband has been on disability for 14 years. Many people ask "what is his disabillity" as he "looks" fine. the actual answer is that we dont know what his disability is because we have no DIOGNOSIS. He just acts in a way that would not allow him to work: he zones out, he becomes unconsious and awakens only to not know where he is. etc. NOT HAVING A CORRECT DIOGNOSIS MEANS NOT GETTING HEALED. INOD is a God send to many in this situation. They did a TV show like "House" to help figure out a diognosis but they didnt do it in real life until INOD. Why dont we have more of these places around the country because INOD can only handle such a few cases as their resources allow. The need is great!!!!!!
I came across INOD when I had pain and fatigue for 5 years. I had been from doctor to doctor who tried all kinds of medication. They could not figure out (and still don't know) what was wrong. None of the medications worked. INOD helped me to realize that I am not alone in my journey for diagnosis and there are others who have more significant issues than I have. I got to tell my story. I didn't expect a personal response back but that's what I got. The articles and stories are encouraging and inspiring. I never knew that there were other like me having issues with pain and the perceptions that doctors were suppose to know everything. Now I work with a great doctor to help with my symptoms. He thinks out of the box. I am feeling better than I have in 7 years. I appreciate INOD because the website gave me the will to keep searching and now I know that I don't have accept that pain will be a part of life forever.
I was at my ends rope! For over 12 yrs. I suffered with the most horrific, new, MAN-MADE disease. Totally unknown and sci-fi creepy, so unbelievable, yet REAL!! After seeing over 18 Drs., Specialist, Forensics Pathologists, written CDC, News Stations and spending thousands of dollars just to be labeled Delusional, I was sickened to discover the Drs. I trusted with my life and get half my hard working monthly check, could care less about learning how to deal with the NEW DEADLY Diseases arising. The second they took their OATH, it was out the door, forgotten. They know everything and have no need or desire or compassion to continue learning. If they can't diagnose your problem with a pill, surgery or a psych., Drs. label you Delusional. Though this nightmare disease was extremely painful and one couldn't even make up such a frightening, more horrific disease, the pain and anguish the Health Care System put me through for so many yrs. was far worse!!! They gave me NO HOPE NO HELP NO COMPASSION, just took my $$$. I started self medicating to the point I would do just about anything to end this nightmare and pain. Death would show me more compassion and assistance than ANY worthless Dr. at Kaiser EVER did. Then, after 12 yrs of searching the Net for help in ANYWAY, concerning Morgellons Disease, and about to give up, II came across this Non-Profit (trusted them already) organization called INOD. I E-mailed my problem to INOD, I think it was just getting started at the time, and not only did THEY LISTEN and replied back THE NEXT DAY, they treated me with compassion and understanding, and believed what I told them. Without a doubt, INOD TRULLY CARES and did ALL they possibly could to assist me. INOD is, in my opinion, sent from GOD. I had the pleasure of getting to know Marianne. In fact she was the one that helped me. Mariannedis an Angel on Earth! She is, genuinely, a caring and supportive person who represents INOD to the Highest Degree. Even though Morgellons Disease is now, finally getting the attention of the public, and some Drs. are taking it seriously, Marianne and INOD has, from the start, been there for me. Even now that I'm over the worst part of Morgellons, and Kaiser even did BOGUS research on the subject to shut the public up (yet still say thousands around the world are DELUSIONAL), I still get an E-mail from Marianne, just to stay in touch. If ANYONE is in desperate need, mentally, physically and emotionally drained by so-called Medical Proffs. and have no where else to turn, please know INOD IS THERE FOR YOU in EVERY WAY!!! I thank God, I found their site. Thank you, with ALL my heart and gratitude, Marianne and ALL the other Earthly Angels at INOD for your assistance and for caring. This amazing Non-Profit Organization, IS For The People, By The people who trully care and do EVERYTHING in their power to help someone in need. INOD is EXTREMELY necessary for those who have nowhere else to turn. You WILL NOT be turned down if you haven't the money to donate to their cause but I hate to see where I would have ended up if I hadn't discovered INOD. We NEED them to watch our backs when Drs. turn their backs. Please, if you can, help keep INOD running. Lives depend on them.
I am writing to mention and ask you about a specific diagnosis path that I am not sure that you do.
I have a dear friend who has had many symptoms and a painful health history for quite a few years. Although an adult, the recent diagnosis has been a relief and yet now leads to possibly years of recovery. She has spent years of visits to doctors, unbearable , unproductive testing, and medication bills that are bankrupting her., all with no diagnosis.
Her recent diagnosis is LYME disease with one its many co-infections. One co-infection is highly similar to malaria. If your group has not done any research on this disease- you must- and must suggest it to all of your members. We are on a mission to get the word out.
Go to www.underourskin.com and research Lyme disease on Youtube. You will be amazed at the thousands of people OF ANY AGE that are infected and have multiple unrelated sypmtoms- which make no sense ot Lyme-illiterate doctors of today who follow CDC guidelines and leave infected patients to continue to suffer and die without treatment. Buy the Under Our Skin DVD and be amazed at what you see and hear, or find a local screening and watch. This is a major epidemic, being ignored by the Infectious Disease group of the government, all for the purpose of not covering patients with insurance. It is a true conspiracy. This message is in no way a scam to sell DVDs! This is an epidemic that must be acknowledged and stopped. If our message saves just one of your members, then it has been worth it.
Hopefully you are telling all of your members to go immediately to Igenex on the internet www.igenex.com and request a test package, or call them and discuss it with them. Unfortunately it is highly expensive, but the most definitive, sensitive "Cadillac" test in the world. Investigate all of the Lyme websites and find a local group to discuss symptoms. There are over 50 symptoms that can define or point to necessary testing, and are all usually unrelated, which confuse today's doctors. Even if local normal blood tests (Western Blot Tests) by your average doctor show even one indicator "band", you should pursue it further by finding a Lyme-literate doctor in your area. If you don't show at least 5 bands, the CDC and your doctor will tell you that you do not have it, when you most likely do! Then they will refuse treatment. You may have to travel for hours, as we do, but it is worth every minute. See how it affects children in the documentary film, who were either infected by a tick bite- or received it through the womb, as Lyme disease is sexually transmitted. Everyone in a family MUST be tested if any one person tests positive. Hundreds of families are all infected across this nation.
Please pass this on to your members, and if you are already suggesting this research into Lyme disease, then that is wonderful, and thank you for listening to me.
Personally, I have not had experience with INOD, but realize the important of knowing that INOD exists, should my family, friends or myself ever be in need of an accurate diagnosis of an unusual medical problem. I have known Marianne Genetti, for 55 years as we attended high school together. She is very intelligent, extremely hard-working and for many years greatly concerned about misdiagnosis of diseases in the medical field. She has worked relentlessly in establishing INOD.
I have known Marianne Genetti since she first conceived of INOD as a response to the frustration and uncertainty of her own undiagnosed health issues. She is a tireless worker and champion of patients and has always proceeded with the philosophy of how her organization could meet the needs of patients. Many of our conversations during the inception of INOD dealt with what she could realistically achieve. Marianne determined that a combination of advocacy for changing the medical diagnosis system coupled with helping suffering individuals navigate their way through this confusing process. A top-down approach and a hands-on focus on the individual. help
INOD serves a real need in our community. Even the hospitals are recognizing that diagnoses by medical professionals based on their limited experiences do not serve many patients. INOD takes the ego out of the diagnosis and uses new ways to share information with people who have not been diagnosed by traditional health practitioners. Our family benefitted from the caring sharing we received.
If you have pain or symptoms and you have been to the doctors but they cannot find anything wrong. This is the perfect website and group to go to. I get so frustrated because the doctors cannot figure out why I have the pain I have. I found this great website and filled out information. I was surprised when I received a written heart felt response about my symptoms and they gave me some things to try. The website contains alot of links that will help when you need of more information. I never knew it existed and that there other people are dealing with the same problems. I am glad I found it and I believe that it will be helpful for others when you are at a loss of what to do next.
Sadly I contacted them about my child and I was told they could not help me because he was not an adult. Perhaps they should accept people for help regardless of age.
â– I have been everywhere and seen a lot of doctor’s and no one can seem to help they just say it’s all in my head as i continue to get worse and worse. Sometimes things are so bad i feel like i am going to pass out,my b/p goes higher and heart beats so fast i think i am going to die. The pains are so severe they knock me down and now my legs are starting too they feel like they are bruised or sunburn but they are not and my heart beats in my throat not my chest. This all started when i was 33 years old and found out i was pregnant for my last child but i am now 42 and it is worse not better they say anxiety/panic attacks but the meds did nothing except make me gain 70 pounds or more. I am lost and at my ends wits no one can help me. My symptoms included: low energy, poor stamina, sore throat, unexplained menstrual irregularity, upset stomach, abdominal pain, chest pain, rib soreness, shortness of breath, cough, heart palpitations, pulse skips, heart murmur, joint pain, joint swelling, stiffness of the joints all over my body, muscle pain and cramping, twitching of the face or other muscles, neck pinches and cracks, neck stiffness, neck pain, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis, (Bell’s palsy), double, blurry, increased floaters, light sensitivity, buzzing, ringing, ear pain, sound sensitivity, increased motion sickness, vertigo, major facial flushing and bizarre skin rashes, poor balance, lightheadedness, wooziness, panic attacks, anxiety, tremors, confusion, difficulty in thinking, difficulty with concentration, forgetfulness, poor short term memory, poor attention, disorientation, getting lost, going to wrong places, difficulty with speech or writing, mood swings, irritability, depression, disturbed sleep, too much sleep, too little sleep, the overwhelming need to sleep for 4 hours every afternoon, and a complete intolerance to alcohol.sore on scalp,dry mouth and lips,burning to head,pins and needles in hands and feet,pain(like charlie horses) in the legs,pain,bottom of my feet pain,IBS,gas,heartburn,no libio,sex hurts,stiffness and cramps in fingers and toes,hot flashes,chills and cold, constant urge to pee,bones crack easily,disrealization,disoriention,lightheadness,dizziness,muscle twitching,feeling like a cat is purring inside my body,pain if i push on my skin bones or anything on my body,sometimes a weird taste in mouth,rib pain,eyes pain,back pain,feelings of doom and death,quickly angered,heaviness in stomach,weight gain,no motivation,afraid to leave the house, 8 years of hell,tired alot or never goes in spans,MEAN MEAN BITCH ALOT,littlest things set me off,ear/jaw pain,type the same words over and over yet type them mixed up?,hair never grows (same length since i was 10) pale skin,NO ONE WANTING TO HELP ME!!!!!!!!!! days where i can do everything and then some days where i can move and i am dying,groin pain,itchy skin,if i open my mouth i can hear my heartbeat,headaches,depression,bi-polar,crying all the time, pain in legs,pitting,weight gain,blurry vision,stomach pain,nausea,fatigue,heartburn,stomach pain,twitching,muscle aches, 1/29/09-vomiting,diarrhea,stomach pain,heartburn,weight gain,numbness,shakes,leg cramps,high eosinophils,disoriention,bloating,sick! please if you can have a heart and try to help me i am so close to just ending it that pain is soooo bad……………..god bless..tina My symptoms included: low energy, poor stamina, sore throat, unexplained menstrual irregularity, upset stomach, abdominal pain, chest pain, rib soreness, shortness of breath, cough, heart palpitations, pulse skips, heart murmur, joint pain, joint swelling, stiffness of the joints all over my body, muscle pain and cramping, twitching of the face or other muscles, neck pinches and cracks, neck stiffness, neck pain, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis, (Bell’s palsy), double, blurry, increased floaters, light sensitivity, buzzing, ringing, ear pain, sound sensitivity, increased motion sickness, vertigo, major facial flushing and bizarre skin rashes, poor balance, lightheadedness, wooziness, panic attacks, anxiety, tremors, confusion, difficulty in thinking, difficulty with concentration, forgetfulness, poor short term memory, poor attention, disorientation, getting lost, going to wrong places, difficulty with speech or writing, mood swings, irritability, depression, disturbed sleep, too much sleep, too little sleep, the overwhelming need to sleep for 4 hours every afternoon, and a complete intolerance to alcohol.sore on scalp,dry mouth and lips,burning to head,pins and needles in hands and feet,pain(like charlie horses) in the legs,pain,bottom of my feet pain,IBS,gas,heartburn,no libio,sex hurts,stiffness and cramps in fingers and toes,hot flashes,chills and cold, constant urge to pee,bones crack easily,disrealization,disoriention,lightheadness,dizziness,muscle twitching,feeling like a cat is purring inside my body,pain if i push on my skin bones or anything on my body,sometimes a weird taste in mouth,rib pain,eyes pain,back pain,feelings of doom and death,quickly angered,heaviness in stomach,weight gain,no motivation,afraid to leave the house, 8 years of hell,tired alot or never goes in spans,MEAN MEAN BITCH ALOT,littlest things set me off,ear/jaw pain,type the same words over and over yet type them mixed up?,hair never grows (same length since i was 10) pale skin,NO ONE WANTING TO HELP ME!!!!!!!!!! days where i can do everything and then some days where i can move and i am dying,groin pain,itchy skin,if i open my mouth i can hear my heartbeat,headaches,depression,bi-polar,crying all the time, pain in legs,pitting,weight gain,blurry vision,stomach pain,nausea,fatigue,heartburn,stomach pain,twitching,muscle aches, 1/29/09-vomiting,diarrhea,stomach pain,heartburn,weight gain,numbness,shakes,leg cramps,high eosinophils,disoriention,bloating,sick! 3/16/09-looking into Pheochromocytoma,and aderniline glands,please help me 6/14/09-back pain,nausea,headaches,tired,weight gain,moodiness,numbness,cold on right side,stomach pain and all of the above! help!!! 6/19/09 -stomach pain,tired after eating,headaches,back pain,fullness,weight gain,constantly peeing there is more…
Fortunately, our family hasn't needed to use the services of INOD;, however, we feel good knowing that there is a place to turn to if we ever do have an undiagnosed illness. Kudos to our dear friend, Marianne, for all the work she has done, and all the great ideas.
my husband has had undiognosed illnes. we have been to more doctors and had more tests than can be counted. His illness has made him "disabled" as far as working goes. I have exhausted ourselves and resources both financial, emotional, and medically with no answer. I was about to just give up when I heard abt INOD. As I read about it, I could not believe it that there was ONE place we could go and have a CENTRAL hub to keep things together. I am in the process of putting all of our history to together so that I may present them to INOD. But just knowing a place like that exists gives us HOPE. They need more assests to keep them running to give us HOPE.
I searched for healing from a debilitating undiagnosed chronic illness for more than 10 years. My journey eventually led me to philosophies, treatments and techniques that helped to vastly improve my life. I was fortunate to meet Marianne at a time when I was looking to share all that I had learned about health and healing...I was so inspired by her desire to give back and help others, that I created a website (HealWithHope.com) and got involved in other ventures that are geared to empowering others to find healing in their own life
Marianne Genetti, the founder, is extremely dedicated to INOD. I have helped Marianne with publicity and in trying to get the word out about INOD and to help them accomplish their mission goal.
I had been suffering from a disease for over 7 years, and after going to many doctors, I decided to go to NOR.s conference in hopes to find a doctor or member that could find out my illness. After contacting various doctors and representative at NOR and not having found anyone that could help, I was ready to give up. Them I met with the Founder of INOD and she told me my illness was a rear disease,she helped me, she researched my symtoms, and my medical records, and have me the hope and guidance I desperatelly needed. I went to the right place and was told by the doctor I have iosonophylia phasiatia. I am on the medication and treatment and I am doing great. All thanks to the help of Ms. Genetti of INOD.
About a year ago, I found INOD on the web. They told me about about glycogen storage disorders and a six hour glucose tolerance, as an unexplored option to my low at blood sugar levels (62), and severe fatigue...Then I never heard from then again! Then in June 2010, INOD e-mailed me, and asked me to write a review for them, so they could get funding...I emailed them back asking how INOD could help me. I wanted to know more about INOD. I am still undiagnosed, and am becoming disabled (with muscle pain and stffness and trouble walking). I also have a stomach infection (H.PYLORI). The antibiotics did not help, and the doctor refuses to re-test me. I cough all up sputum all the time. (I lost two jobs, because of my illness, and have to work part-time, sitting down, and I am geting in debt. But, INOD did not reply with any suggestions about how they could asist me! I also sent INOD a copy of a letter I gave to the hospital asking why the infectious disease doctor did not re-test me for H.PYLORI or give me a sputum culture, after I had abnormal blood tests for infection. I was disapointed with their lack of response or concern.
My mom and I have been to dozens of doctors including specialists over the years. We've had countless tests done and doctors tell us they are "stumped" and that we are "complicated cases". After we leave, they don't spend time researching the literature or calling colleagues to get an answer for us. They are only paid for their 15, 30 45 min. or hour long appointment. They have no incentive to go beyond that to find a diagnosis for their tricky patients. The patients who live without a diagnosis and their family members who watch them suffer and possibly die have a huge insentive to research the problem on their own and then take the information to the next doctor. INOD gives patients and their families a comprehensive site in which to search many rare disorders. We don't have to purchase expensive books, or leave our home to do research at a library. We can stay home and research and print from the comfort of our homes and some people can not leave to do this extra research because they are caring for a loved one who has an undiagnosed disorder. Without this site, more people will go longer without an answer. I have spent countless hours combing through the site and once or twice we thought we find the answer. Without this site, we wouldn't even have HOPE of finding an accurrate diagnosis. Some people get to a point, where the doctors feel that they have done everything they can - and so they stop and just try to manage the symptoms of a nameless diagnosis. We don't want to settle for that. We hope to find an accurrate diagnosis so that it can potentially be cured and we can resume the quality of life that we once had. This site is very valuable. I have it marked as one of my "favorites".