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September 9, 2012

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September 9, 2012

My husband had been experiencing severe pain in his lower left abdomen for several months. He had x-rays, liver scans, colonoscopy, endoscopy many blood tests and examiniations by 3 doctors. No one could explain the pain. INOD was sympathetic to our needs but offered chiropractor or other form of healing. We didn't do either for different reasons. Although I kept questioning it at the time no one suspected that it could have been from Remicade infusions (for arthriits). However on October 31 2011 while having an infusion he had an allergic reaction and had to cease getting those infusions. About 3 months later the pain subsided and has never returned since. A good result but after many months of pain, tests, doctor visits and who know how much money was spent by our insurance company. We are just glad it is over!

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

A little

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

September 9, 2012

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September 9, 2012

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.

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Will you volunteer or donate to this organization?

Unlikely

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

Life-changing

When was your last experience with this nonprofit?

2010

September 5, 2012

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September 5, 2012

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.

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Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2009

September 5, 2012

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September 5, 2012

My young daughter suffered for many years with an undiagnosed ailment that left her at times lying in bed in the fetal position due to severe pain. It began in early high school and continued through college negatively impacting her grades due to all the times she missed class or was in too much pain to study. At first I did not take her very seriously thinking she was a "drama queen." Nevertheless I began to take her to doctors. One after the other had a different diagnosis for the pain and not much in the way of treatment. In college she made many trips to the local ER seeking relief. It did not come and as she became more desparate, I as her mother did too. What could I do to help my baby. I had no intention of giving up but had no idea what else to do or where else to turn. That is when I began to search the internet and came across a web siter for INOD. I wrote a lengthy description of her condition but expected little or nothing in return, but I was grasping at straws. Lo and behold I received an incredibly thoughtful response with some recommendations that made sense. I then sought out providers that might be aboe to evaluate and treat her as suggested. By some miracle, the consultants at INOD hit the nail on the head. Even though my daighter still suffers intermittently from this pain, it is far less intense and she has practitioners who can treat her and provide relief. I will be eternally grateful to these kind people at INOD.

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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

July 31, 2012

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July 31, 2012

INOD fills an important role that currently is overlooked in traditional medicine and other non-profits. INOD provides emotional support and acts as a resource for individuals who have been incapable of receiving a correct diagnosys. Marianne Genetti is very knowledgeable and is able to provide helpful guidance as to where the individuals may find doctors capable of diagnosing and treating such illnesses.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

July 30, 2012

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July 30, 2012

When I was 18 I found that if I walked fast for a length of time, my legs would stop working. They didn't hurt. They weren't numb. They didn't tingle. I just couldn't move them until I stood still for several minutes. Then I could again walk if I went slow. Each year, I walked slower and shorter distances until three years ago when I became unable to walk unassisted. Now I am 74 years old and I am still undiagnosed! When the doctors could not figure out what the problem was, they said it was psychosomatic. But I live alone so isn't as if there is someone to cater to me. I have also always worked (and still do) so it wasn't to get out of work. Diagnosis is still in the dark ages. New tools, new tests and new protocols for diagnosis are needed. Thank heavens INOD is championing the cause for those of us who are undiagnosed.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

July 24, 2012

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July 24, 2012

After I went undiagnosed for over 25 years with a disabling, life-threatening condition, I was grateful to find INOD. I was pleased to find other caring, intelligent people who were passionate about helping those who are chronically undiagnosed. INOD does important work communicating the plight of undiagnosed patients worldwide, and helping individual clients explore creative options that may have been overlooked by the medical community. There are very few resources for people who don't have a diagnosis, and millions go undiagnosed for years, so INOD's contributions to public health and wellness are unique and essential.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

July 20, 2012

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July 20, 2012

I have suffered from being undiagnosed for many years. To discover a group of willing, experienced, compassionate survivors who have educated themselves to make the path of the undiagnosed behind them easier speaks volumes for the staff at INOD. We will join hands until we have exhausted all avenues to assist the undiagnosed in finding the care they need.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

July 19, 2012

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July 19, 2012

I have always lived under the assumption that if I became ill a trip to my doctor would result in a diagnosis and treatment and all would be well. Unfortunately, I have since discovered in the last 7 months that this is not always the case. I have seen many specialists, undergone many tests, tried all sorts of prescribed medications and traveled far from home to two well respected diagnostic clinics, all resulting in no diagnosis. Meanwhile my physical weakness and hopelessness increases every day. I am so thankful that I have discovered INOD. Marianne's supportive efforts and compassion on my behalf has been invaluable and such a comfort. And now I don't feel so all alone.

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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?

2012

July 18, 2012
1 person found this review helpful

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July 18, 2012
1 person found this review helpful

There are no words to describe the positive and potentially life-saving impact of " In Need of Diagnosis" to a patient desperately seeking to identify and treat an unknown condition which they fear, left untreated, will take their life. As a multi-decade undiagnosed patient-survivor, I can attest, firsthand, that it is often this pre-diagnostic stage that is the scariest and most life-threatening. Given the thousands of rare diseases that exist, many of which the average doctor may never see in his entire career, desperate patients are confronted with physicians unfamiliar with their symptoms... and, as a result, dismissed and/or demeaned, (without necessary treatment), left to flounder in unknown territory--with no medical backgrounds-- as they do everything in their power to save their own lives. It is during this transitional stage that "In Need of Diagnosis", and the support is offers, is invaluable. When no one else hears, INOD does, when compassion seems non-existent, INOD exudes it, when patients feel they have no one to turn to, INOD is there. Having seen over one hundred specialists, nationwide, in an attempt to unsuccessfully determine what was causing me to inexplicably lose vision, jolt awake to a background of millions of twinkling stars against a black background,-- with a force that catapulted me off my pillow, ( multiple times every night), drool, become urinary incontinent, twitch, fall into walls, lose the ability to swallow without choking, etc., it became painfully apparent that not every patient is diagnosed easily. Fortunately, my diagnostic search ended with an accurate diagnosis and appropriate treatment for my life-threatening disease...almost two decades later ! As a result, I vowed I would do everything in my power to prevent others from experiencing the diagnostic nightmare I was subjected to...but I wasn't quite sure how to go about it. Then I read an article in AARP magazine where INOD and their mission to help the undiagnosed was recognized--and I immediately knew what I had to do. I wrote to the Executive Director, Marianne Genetti, also enclosing a copy of the book I wrote detailing my experience, "But, Doctor, You're Wrong!". Subsequent to receiving it, she called me and we talked extensively about INOD's goals, the need for a specialty in "Diagnostics", how the organization supports the undiagnosed and many other aspects of this compassionate and informative organization. I told her I was looking for an avenue to share my ideas and concerns...and, after speaking with her, realized I'd found it. I was honored to be invited to be a member of The Board because it is associated with a concept I believe strongly in. While it is unrealistic to expect every doctor to know each symptom of the thousands of rare diseases in existence, (or the atypical ways in which they can sometimes present), it is unconscionable to turn such ill patients--possibly even life-threatened ones-- away. INOD doesn't do that...though they do not diagnose, they listen actively and offer support as appropriate. No matter how alone or unheard they might have felt in the past, undiagnosed patients know from their initial contact with INOD that they no longer are...which means more than words can say at such a vulnerable time. My only regret is that INOD wasn't in existence when I was searching for a diagnosis--but the important thing is that it is now !

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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