Last year I wrote a review as a volunteer, this year I get to write my review as a client: I became ill in March and began a round of doctor visits, testing, depression and frustration. My interaction with INOD allowed me to deal much better with the depression and frustration. In August I was one of the lucky ones that got a valid diagnosis. It is normally an average of 7 years to achieve that! Some of my symptoms were multiple GI issues, headaches, body pain, excessive tiredness, swelling and bloating. Turns out I have Crohn's and I am blessed that it is a mild case. the doctors finally stated the reason they could not diagnosis me earlier was because 1) it was a mild case 2) the disease itself mimicks many other diseases and 3) my symptoms would come and go. With INOD support and referral I was able to get an early diagnosis by going to a physician that practices the philosophy of functional medicine (something I had not heard of before) where they look at the body as one big machine not just parts. I am very grateful for the presence of INOD in my life and know that you would be also either as a resource for you or as a charitable organization that you support financially.
What a wonderful organization! The information and detail of options that may lead to a diagnosis were just outstanding. While they are having a backlog in timely responding to the hundreds of help requests they get when the information arrived it was so very helpful. I am so blessed to have made this contact!
So very impressed with this organization. It runs on a shoe string budget but reaches thousands every month. The support, empathy and information that is provided is remarkable. Being in the industry I know how difficult it is to get donations and keep moving forward when you don't "give financial help to others" but I can recognize true helpfulness and dedication when I see it!
The purpose of In Need of Diagnosis, Inc., (INOD) has continued dispite the lost of its founder, Marianne Genetti, earlier this year. It is so refreshing to see a small non-profit such as this take such strides to ensure the legacy that Marianne created continues. There are many activities planned for 2014 and they have helped thousands of individuals from across the world find effective treatment. I urge each of you to donate to this valuable resource.
INOD was conceived and started by someone who herself went time after time to doctors and was unable to get a diagnosis. Marianne's tireless passion to find answers for herself and others lead her to create INOD. Despite her death earlier this year, INOD continues to be supported by her estate, her family, and the many individuals she inspired.
What many of us consider an illness is just a symptom or byproduct, if you will, of something else - - the root cause. The hit show "House" probably best exemplified how a doctor identifying a medical problem can be akin to a police detective solving a mystery. Unfortunately for all of us, like on the TV show, most doctors are not Gregory House. INOD serves to help individuals to find their "House" so that they too can get the answers and hopefully the cure to what ails them.
The sad reality is that an undiagnosed illness and condition could happen to anyone of us and INOD could play the pivotal role in getting an answer.
INOD helped me try to find a diagnosis for my son who was undiagnosed at the time I contacted them. I remember being told by many people (outside of INOD) that a diagnosis isn't the most important thing and that my child is unique even if he never gets a diagnosis. That is easier to say when you are not living life as a mother of an undiagnosed child. I had fears that my son would die because the doctors didn't know what he had. I finally got a diagnosis but continue to be a member of INOD. Because of my son's diagnosis, I found more health problems that doctor's would have never checked. I found out that people with his syndrome (Cri-du-Chat) have heart defects and asked the doctors about it. They said there was no need to test his heart, it was fine. I requested for his heart to be checked, and guess what, he has a heart defect. A diagnosis doesn't change who we are, but it does help get adequate care and does help the undiagnosed move forward and stop the maddening search to find out what the problem is! I can't say enough good things about this organization.
The only place that offered any kind of information on my son getting a diagnosis and trying to find someone in the world tha had anything similiar to my son's diagnosis. More helpful than the doctors trying to figure out what my son had (rare genetic disorder).
I am a 40 year old, mom of two. They are 12 and 15. I started having problems in May 2010. I have spent over 10,000.00 now for a undiagnosed problem. The last result I received was a uncureable disease. I have contacted CDC and NCID numerous times. I have yet found anyone to answer me nor a doctor to help me. I have emailed around the world for help, INOD sent me to a different kind of doctor. Which started with hormones instead of vitamin defiency. I have started his treatment, which I some what feel better but, I am still very tired and scarred for life. Nothing can make the scars and mental emotionally go away. It would be long story to tell for the way I have got treated by your every doctors looking for their next dollar. They don't care about people. I don't understand why doctors go into this profession and could care less about you. I could not sleep at night. But, I guess they can. The most courtesy I have been shown was from INOD and the doctor they referred me to. It's a shame that CDC covers up the people that have been infected with this. I have bought into several of the cases. I have begged the schools and NCID, if nothing else, just to get me in to study this, if not for me, to help the next person. I have staphacocci hyicus. Beta-resistance. Colony is positive. I have had no treatment. As of now there is no treatment. I have got 9 different answers. I will fight to live for the love of my children. My symptoms are very tired, aching joints, ear producing bone like material, inside of nose producing extra bone like material, around nails and toenails keeps forming a shell like hard material. Same as in nose and on ear. No one really understands what I have been through and what doctors have put me through. I was told needed a infect disease doctor. The doctors that don't know what this is have said they would not write one or its all in your head. I don't understand if you know your diagnoses and medicine didn't work, then it couldn't have been the problem, and just write a referral that takes 1 min of your time, to help this person. But they wouldn't. So today, I go on fighting, I have stopped letting the doctors that care nothing for me take my last dime. I am continuing to see a different kind of doctor that doesn't study medicine. Vitamins and hormones, in hopes I soon get better.
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!
INOD fills a need that the current medical model does not fill. This organization has helped countless individuals deal with their symptoms that physicians are not able to put a name to. Ms. Genetti's dedication to this cause is to be applauded.
Marianne and her staff have helped so many people as both support and a sounding board for people how just do not know where to turn with their health issues. They are the most caring individuals and do everything in their power to point people in the right direction to learn more about their issues. We need more organizations like this one.
INOD is an organization that is greatly needed in our society. I have had the fortune of being able to work with Marianne and to see the hope and inspiration that she gives to everyone that contacts INOD. Most of the people that contact INOD have been through years and years of going to doctors and being practiced on to try to find out what is wrong with them. INOD is the ray of hope that they have been looking for.
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.
I am a new client. For me to have the support and encouragement from INOD is amazing. To be ill is hard enough. Learning to deal with the illness, learning to make changes in your life to accomodate the things you cannot do and leaning to keep going no matter what. takes a great deal of energy. Being dismissed by doctors is hard to take - they don't know the answer and want to send you to a psychiatrist. Family and freinds begin to lose faith to after five years of no diagnois. It is hard not to give up. Thank God for INOD. THey believe and understand. Once again I have hope that there may be help out there for me. I have hope that a diagnosis will be found.
For the last five years I have been to doctor after doctor to find a diagnosis. No one can understand just how incredibly hard this is unless they have been through it. I have been ill and am being told "See a psychiatrist." I have tremors, headaches, weakness and speech issues. I have been in counseling for two years and have learned to live with my condition, through my spiritual journey I have learned to celerate the things that I can do instead of focusing on those things I cannot do such as "drive." Recently I started giving up and that I would never find answers or help. I felt like no one believed me any longer that I was physically ill - this is a very diffiuclt place to be in. Then an angel came to me in the person of Marianne from In Need of Diagnosis. Someone believes me when I say I am ill, someone is going to help me find answers and help. This is a light in an incredibly dark place. I thank God for people like Marianne who listen and want to help, who are willing to look beyond the "normal" symptoms that doctors look for. Once again I have HOPE. Thank you INOD for your amazing work. What a wonderful organization reaching out to those of us who suffer without answers or help from the medical profession. May God bless this amazing organization and all those they minster to. Amen
i am mexican, wrote long ago for my daughter, russia angely, which has no diagnosis, I saw some doctors called in Washington and I am very happy because although we are pending a response I heard at least thank wing person I relate command with doctors and send a big kiss and hug god bless you always..
hola soy mexican ,hace tiempo escribi el caso de mi hija llamada russia angely, la cual no tiene diagnostico ,me llamaron la vieron unos doctores en washington y estoy muy feliz porque aunque estemos pendientes por una respuesta almenos fui escuchada agradezco ala persona que me relaciono con los doctores y mando mando un fuerte beso y abrazo que dios los bendiga siempre
First of all, to the person in Colorado whose 31 yr. old son with diarrhea, no appetite, etc. It sounds like your son could be suffering from neuroendocrine tumors that usually are very small and are very rare. His symptoms match those for people with "carcinoid'" and other neuroendocrine cancers. Secondly, INOD's service of trying to get an accurate diagnosis is lacking all over the U.S. I know because I've spent the last 14 yrs. trying to get an accurate diagnosis and treatment. To do so, I've gone all over the U.S. and seen 67 so called "specialists". That's the problem. Specialists specialize. They don't get the whole or big picture. There is a DESPERATE NEED for those who are educated and able to diagnose unusual diseases. So thanks to INOD for trying to fill in where no one else has!
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!
Hi sir,Thank you for offering help. My son (31 years old) story of illness for 5 years with undiagnosed chronic gastroenterology ulceration associated with diarrhea.(small unbleeding ulcers at ilume spread with the time to duodenum and colon and stomach). 4 GI specialists in Egypt and USA can't diagnosed the disease but they gave him Crohns medication and intestinal TB and other medication without any improvement or remission.Currently have stable without medication since one year butlose weight and little appetite and diarrhea . What can i do to get help?I have all medical reports and images . sicerely your : Majeed Aldamah. Denver,CO,80231
Although I continue to suffer from my discouraging and debilitating maladies , I appreciate the existence of this organization which was willing to help and at least say, "Hey, we understand, and there are many, many others out there suffering, too." It's time to get the word out. Sometimes, 5 out of 5 brilliant doctors just don't know what is wrong with you.
I've had a vicious cough for over 20 years, all the whole seeking to find out the cause. INOD was as much in the dark as anywhere else. Even a week at the Jewish Health Center in Denver turned up nothing useful, though. I'm sure it's a synape syndrome. but INOD doesn't know anything about that.
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!!!!!!
When my husband had medical problems that baffled all the doctors, I took to the web. After hours of research I stumbled on "In need of diagnosis". The other members gave many suggestions and lots of support. It was bittersweet to join this community and realize that modern medicine was good at treating symptoms, but not at diagnosing the out of the ordinary diseases. Luckily for us we finally got a correct diagnosis at John Hopkins in Baltimore. My sanity was saved by this board. Thanks again.
Approximately 4 years ago, I began to be beset with an array of non specific symptoms that gradually over time became increasingly more severe. I consulted an array of over 20 doctors including 3 UCLA full professors (Neurology, Endocrinology, and head and neck) and an MD at USC who was specifically assigned to obtain a diagnosis on my behalf all without any success. About a year ago, I happened to read an article in the health section of the Los Angeles Times describing a non profit, INOD, who assisted those who had difficulty in obtaining an accurate diagnosis. (Lamentably, the LA Times, for cost reasons discontinued their weekly health section) I e-mailed INOD describing my plight. Almost immediately, I received an e-mail response from Marianne Genetti, Executive Director of INOD. She indicated that an attempt would be made to make a diagnosis from the information provided. Ms Genetti subsequently e-mailed with a possible diagnosis of B-12 deficiency. Accompanying her e-mail was a case history, many references including references to The Functional Medicine Institute with the suggestion that I consult the Institute for references to local doctors. While B-12 deficiency was not the cause of my difficulty, an D.O. referred by the Institute was. I had a gluten sensitivity! This is an emerging field where gluten sensitivity is yet to receive the acknowledgement to which it is entitled. Without INOD I would still be suffering and I mean suffering. Ms Genetti almost immediately responded in a meaningful and helpful way to all my e-mails. Without her and INODs help I would not have been guided to a resolution of what had been a baffling enigma. I would give Ms Genetti and INOD an A plus and then some.