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!
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.
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!
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.
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.