For anyone who still can't find a diagnosis

Posted by z4pper @z4pper, Mar 15 4:12pm

If you are like me, and your options are getting slim, perhaps I can offer a new direction.

I found this not too long ago. It's called the Undiagnosed Diseases Network. https://undiagnosed.hms.harvard.edu/ It can be a difficult and frustrating process to try and find a diagnosis. Especially when you know something is wrong, but the doctors can't seem to find any answers. If you are in this same boat or have been searching for years like I have, I would suggest looking into this program. It's federally funded and it's goal is to find out what sicknesses are hurting the US population. The studies are done to try and find a diagnosis when all other methods fail, and to further research into lesser known illnesses.

There is a catch though. They cannot promise a treatment or a cure, but they will do their best to get you a diagnosis. (Which if you haven't been diagnosed and cannot work, you know all to well that a diagnosis means everything when applying for disability.) They have various locations across the US and have cutting edge tech and doctors for those sites. They ask that you fill out a questionnaire, and do some thorough testing (doctors/specialists/etc.) before applying to them. If you choose to apply, it can take 6-8 weeks for the doctors to review your medical records, and then they will tell you one of 3 things: "You've been accepted." "You need to do some more testing before we are allowed to see you." or "You've done everything we possibly know how to do." But if you're like me, and are at the end of your rope, this might be worth a shot.

They will block out an entire week or two, set apart for you, to do all the testing and appointments. And because they are federally funded, they are willing to work with you in covering some of the expenses when you go. To find out which, I highly suggest contacting them personally from their website, the info is located at the bottom of the page.

Hopefully this will help some of you whom I have seen, who are low on hope, or have exhausted all of your options. Hopefully, this will help give you that beacon that you are so desperately searching for. Keep up the good fight. Because your life is worth it!

~ Ian

PS. I have also found a temporary alternative that actually has given me some surprising and positive results. If you have unusual symptoms without any explanation, have joint pains without any cause, or have frequent kidney stones, vulva oddities, or diabetes. I would highly suggest looking up Low Oxalate Diets. Or youtube videos featuring Elliot Overton or Sally Norton. They have If it's something you think could help you, look into the facebook group Trying Low Oxalates (TLO) headed by Susan Owens. Research it thoroughly before trying the diet at all. And I also have one other source that has proven to be functional. Check out Joel Wallach and his books 'Dead Athletes Don't Lie' and 'Dead Doctors Don't Lie' for cutting edge info on epigenetics and nutrition and how they effect everything in the body. Good luck!

Oh my goodness, @z4pper I sure wish I knew about this when I went a year and a half with no diagnosis for what turned out to be non-alcoholic cirrhosis. I live in southern NH so Mass General became my transplant center (liver transplant 09.23.2016), and Mass General is affiliated with Harvard. I learned from my experience, that if I don't get a diagnosis in a reasonable amount of time I will head to Boston. Pretty much all of my health care is there now except for my PCP due to convenience.

When I discovered that I had cirrhosis and was able to research the symptoms I discovered that I had so many red flags it was ridiculous that it was not diagnosed. My PCP had no idea. The PCP I had initially thought I had Alzheimer's due to the episodes of confusion! I changed PCPs after that. I was also under the care of a hematologist due to my platelet counts decreasing. Finally, I was sent to a neurologist due to the confusion episodes and he was the one who suggested it was a liver problem.

I will definitely save this information.
JK

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