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.