IN NEED OF DIAGNOSIS INC (INOD)
November 2, 2011
I wrote to INOD last spring about a puzzling and painful problem my daughter was having. She had seen numerous MD's without relief. She was desparate, I was despairing. I didn't know where else to turn and decided to contact INOD as a last resort; after all, what did I have to lose? A couple of weeks later, I received a reply filled with specific suggestions and information. Deciding to follow through, I brazenly called the suggested health practitioners and asked point blank about their abilities and credentials. They all responded and were very helpful. She began to see these practitioners and one thing led to another and she has improved!! She is not out of the woods yets, but bouts are less severe and shorted in duration. She and I were at our wits end until INOD came to the rescue. I can't thank them enough for getting us on the right track. My donation will be forth coming.
Elaine
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2011
April 26, 2011
INOD staff is very caring. They send you plenty of relevant information and follow up often! I've not been able to pursue some of it just yet because of a personal situation but anyone who needs this particular service should definitely contact them. And donors and volunteers should look into this organization without a doubt! Highly recommended!
The Great!
I've personally experienced the results of this organization in...
communicating with staff in regards to my multiple symptoms
Ways to make it better...
If I had to make changes to this organization, I would...
Nothing to change really! they're great
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How would you describe the help you got from this organization?
A lot
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
How did you find this group?
Through a government site but I cannot recall which one
What, if any, change in your life has this group encouraged?
reconfirmed my options and gave me relevant information for research
When was your last experience with this nonprofit?
2010
December 5, 2010
Hello,
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.
The Great!
I've personally experienced the results of this organization in...
I hope all members read this helpful information
Ways to make it better...
If I had to make changes to this organization, I would...
I hope all members read this helpful information
July 2, 2010
i've been in touch with INOD Marianne for 2 long years and she has helped me in many ways that i can imagine. Although i still don't have a dignosis she has helped me to become stronger and given me hope and help to try and find a cue or a diagnosis. this is a great program becausee doctors don't have time to communicate with you hroughout your day and Marianne is always there for me with a positive response. i want to thak her fo all her help and continue with this program. v/r Tyrone Scott
The Great!
I've personally experienced the results of this organization in...
YES AND IT WAS WONDERFUL.
Ways to make it better...
If I had to make changes to this organization, I would...
DO NOTHING
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What I've enjoyed the most about my experience with this nonprofit is...
it help you.
The kinds of staff and volunteers that I met were...
great
If this organization had 10 million bucks, it could...
be great
Ways to make it better...
it's all been great.
In my opinion, the biggest challenges facing this organization are...
none
One thing I'd also say is that...
contiue to grow.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
July 1, 2010
INOD is an invaluable resource to the public. I emailed INOD several months ago about an injury that has plagued me for years. I expected some sort of a form response, as I usually get that or no response when I reach out to people with questions. Instead, Executive Director herself (Marianne Genetti) responded to my email not only very quickly but also with tangible advice. She gave me recommendations for things I could do or ask about with my doctor. I was very surprised because I had expected a brush-off. Instead, she was so kind to me when I very much needed the kindness. I responded to her with a follow-up question, to which she also quickly responded back. I am sure if I needed additional advice, I could reach out to Marianne and she would be there to help. Thank you very much.
The Great!
I've personally experienced the results of this organization in...
the form of emailed responses from the Executive Director. She was sympathetic, prompt, and gave excellent, tangible advice.
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What I've enjoyed the most about my experience with this nonprofit is...
the excellent, tangible advice and sympathy from the Executive Director herself.
If this organization had 10 million bucks, it could...
change lives.
How frequently have you been involved with the organization?
One time
When was your last experience with this nonprofit?
2010
July 1, 2010
INOD is an amazing organization that provided genuine care and support when all my family had was a world of non-definitiveness. Though INOD obviously did not have the answers that we needed from a Doctor, they provided support, resources and most importantly, an ear to listen and cry to and that made a huge impact for my family.
Photos
The Great!
I've personally experienced the results of this organization in...
a time of need.
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How frequently have you been involved with the organization?
About once a year
When was your last experience with this nonprofit?
2009
June 30, 2010
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.
The Great!
I've personally experienced the results of this organization in...
I have not had any personal experience in INOD.
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How frequently have you been involved with the organization?
One time
When was your last experience with this nonprofit?
2010
My Role: Professional with expertise in this field & I have been committed to providing dental patients with the most biocompatible, safe materials for their dental needs for almost 30 years. I wrote the book "Mercury-Free" for the consumer to have more information on the so-called silver fillings that are .
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June 30, 2010
I have known Marianne Genetti professionally for more than seven years. I found her to be bright, compassionate and more than willing to help others find answers to their medical mysteries. INOD is a beacon of light for those lost in the complex, emotionally charged darkness one can feel when there is no adequate diagnosis, and thereby, no adequate treatment. I would love to see INOD supported generously and enable it to expand its reach to help those of us in need of diagnosis. Tomorrow, it could be me or you.
The Great!
I've personally experienced the results of this organization in...
some of my patients.
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How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
June 30, 2010
Without a diagnosis, there is no treatment, no support, and often no insurance payment. These peopple often have no place else to turn. With few resources, founder and volunteer Marianne Genetti has been helping to work miracles for people who have no other options. There is no medical specalty for diagnosis, so many people have no idea where to turn when doctors don't know why they are ill. I came to INOD after dealing with my own illness that took years to diagnose, and three family members who had difficult diagnoses, one not yet diagnosed. Marianne Genetti (who also has an undiagnosed illness), founder and driving force behind INOD, spent time and her own funds to selflessly help others with what she has learned in dealing with her own illness. She is empathetic and unafraid to approach anyone she thinks might help her clients. She has helped people get access to computerized diagnostic programs. The only other program in the United States, the National Institutes of Health Undiagnosed Diseases program, has a limited scope and takes a very small fraction of those that apply for help. Marianne will do all she can to help anyone who contacts INOD. She is tireless in exploring funding opportunities for INOD, which now has no regular funding, but is accomplishing miracles on a shoestring budget.
The Great!
I've personally experienced the results of this organization in...
support and guidance in delaing with my own and family members' illnesses.
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What I've enjoyed the most about my experience with this nonprofit is...
The tireless work of Marianne Genetti in helping others.
The kinds of staff and volunteers that I met were...
mostly dealing with undiagnosed illness themselves, limiting the resources they can give.
If this organization had 10 million bucks, it could...
change many people's lives for the better.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
June 30, 2010
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
The Great!
I've personally experienced the results of this organization in...
the growth of its capability of achieving it's mission.
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How frequently have you been involved with the organization?
About every six months
When was your last experience with this nonprofit?
2010
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