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Jeannne

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1 reviews

Review for In Need of Diagnosis, Orlando, FL, USA

Rating: 2 stars  

About a year ago, I found INOD on the web. They told me about about glycogen storage disorders and a six hour glucose tolerance, as an unexplored option to my low at blood sugar levels (62), and severe fatigue...Then I never heard from then again! Then in June 2010, INOD e-mailed me, and asked me to write a review for them, so they could get funding...I emailed them back asking how INOD could help me. I wanted to know more about INOD. I am still undiagnosed, and am becoming disabled (with muscle pain and stffness and trouble walking). I also have a stomach infection (H.PYLORI). The antibiotics did not help, and the doctor refuses to re-test me. I cough all up sputum all the time. (I lost two jobs, because of my illness, and have to work part-time, sitting down, and I am geting in debt. But, INOD did not reply with any suggestions about how they could asist me! I also sent INOD a copy of a letter I gave to the hospital asking why the infectious disease doctor did not re-test me for H.PYLORI or give me a sputum culture, after I had abnormal blood tests for infection. I was disapointed with their lack of response or concern.

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

The only help INOD gave me was when I first contacted them, over a year ago...when they nformed about blood sugar tests, that my doctor never did.

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

Have more patient stories posted on their website.

What I've enjoyed the most about my experience with this nonprofit is...

I don't know...I expected more from them...INOD has a list of advisory board members (doctors and nurses), on their website, and no one helped me with my questions, or gave me advice.

The kinds of staff and volunteers that I met were...

I contacted INOD online, and did not meet with any volunteers or staff. The only person I had contact with was Marianne Genetti (President).

If this organization had 10 million bucks, it could...

With funding, INOD could start an undiagnosed data base for patients, and have their staff doctors assist in diagnosing them, as well as act on their behalf as an advocate.

Ways to make it better...

If I knew more about the cause of my illness, I could have asked informative questions.

In my opinion, the biggest challenges facing this organization are...

INOD needs to have more information available to people who contact them.

One thing I'd also say is that...

Too many patients are at the mercy of the medical system. Up to 98,000 patients die each year from medical errors. This is a fact. Undiagnosed patients need all the help they can get!

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

Role:  General Member of the Public & I asked for advice to help myself, and did not recieve a reply.