For anyone who still can't find a diagnosis

Posted by z4pper @z4pper, Feb 9 6:25pm

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. Good luck!

z4pper, I applaud the intent of the "Undiagnosed" program. However, there is another catch. For a reason which I did not learn until another 3 years went by, I was dismissed from the program before I started. That was, that my local doctors had the opinion that if they did not know how to diagnose my diseases, then the Undiagnosed…. would not know either. So they apparently told the program at Stanford that I was just lazy and trying to get out of work. At 80 years age? So I have spent another $100,000 of my money and Medicare's, and others trying to figure out the matter. So be careful. If you don't have your MD's blessing, just forget it. Get your own genome sequenced, and figure it out for yourself.

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@z4pper This sounds very interesting, I’ll have to look it up. I also think that major medical centers and university hospitals can do a great job. People just need to understand that they have to go in very organized. I was one who kept being patted on the head and told not to worry. I’m now being treated for autoimmune lesions in my brain! There is a very good show on Netflix called “Diagnosis” about the problem of getting a diagnosis.

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@z4pper You have a wonderful resource for members like @sunshine21 @brandeervatx @ske22 @catcr505 @goodfriends @barcodebill @caseygirlx0xmv that have discussed their frustration and inability in receiving a proper diagnosis.

Below I have linked a few related discussions where members may benefit from this information.
– Difficult case, several diagnosis, no solution yet https://connect.mayoclinic.org/discussion/difficult-case-several-diagnosis-no-solution-yet/
– Undiagnosed and frustrated: RA? Lupus? https://connect.mayoclinic.org/discussion/hi-im-new-to-the-forum-and-want-to-share-my-journey/
– Not sure cause: Brain fog, anxiety, hormonal imbalance? https://connect.mayoclinic.org/discussion/not-sure-what-to-do-or-whats-causing-this/
– In recovery. Too many symptoms. Autoimmune disorder? HELP! https://connect.mayoclinic.org/discussion/autoimmune-disorder-help/

You seem incredibly diligent. How to you keep going despite the frustrations? Any suggestions for those that are struggling and losing hope?

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@erikas

@z4pper You have a wonderful resource for members like @sunshine21 @brandeervatx @ske22 @catcr505 @goodfriends @barcodebill @caseygirlx0xmv that have discussed their frustration and inability in receiving a proper diagnosis.

Below I have linked a few related discussions where members may benefit from this information.
– Difficult case, several diagnosis, no solution yet https://connect.mayoclinic.org/discussion/difficult-case-several-diagnosis-no-solution-yet/
– Undiagnosed and frustrated: RA? Lupus? https://connect.mayoclinic.org/discussion/hi-im-new-to-the-forum-and-want-to-share-my-journey/
– Not sure cause: Brain fog, anxiety, hormonal imbalance? https://connect.mayoclinic.org/discussion/not-sure-what-to-do-or-whats-causing-this/
– In recovery. Too many symptoms. Autoimmune disorder? HELP! https://connect.mayoclinic.org/discussion/autoimmune-disorder-help/

You seem incredibly diligent. How to you keep going despite the frustrations? Any suggestions for those that are struggling and losing hope?

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Thank you for posting this !

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