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83 Reviews
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April 11, 2013
1 person found this review helpful

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1 previous review
July 28, 2012

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... more

April 11, 2013
1 person found this review helpful

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.

More feedback...

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?

2012

July 28, 2012

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

More feedback...

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?

2012

April 10, 2013
1 person found this review helpful

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April 10, 2013
1 person found this review helpful

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..

en espaƱol:
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

More feedback...

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?

2013

October 14, 2012

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October 14, 2012

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!

More feedback...

How would you describe the help you got from this organization?

Some

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?

2012

October 13, 2012

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October 13, 2012

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!

The Great!

I've personally experienced the results of this organization in...

I have emailed people in this organization and received quick caring and lengthy responses trying to make some suggestions as to places or people to turn to.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2012

How did you learn about this organization?

found it researching for some "answers" online

October 13, 2012

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October 13, 2012

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

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Okay

When was your last experience with this nonprofit?

2012

October 11, 2012

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October 11, 2012

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Get them more funding, especially for staff--they got back to me but because they are in high demand it took a bit.

More feedback...

How would you describe the help you got from this organization?

Some

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?

2012

October 11, 2012

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October 11, 2012

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.

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How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2011

October 11, 2012

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October 11, 2012

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!!!!!!

More feedback...

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2011

September 26, 2012

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September 26, 2012

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.

More feedback...

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?

2010

September 12, 2012

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September 12, 2012

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.

More feedback...

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

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