For anyone who can't find a diagnosis: Undiagnosed Disease Network

Posted by z4pper @z4pper, Feb 9, 2021

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!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Can you tell me if it was a very prolonged application that your physician had to fill out? I’m worried that my doctor is just so busy that she won’t have time to do an application for the undiagnosed disease not work.

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@z4pper

Yeah I've had 3 friends/family have adverse reactions from the Vax.

2 have unexplainable neuropathy and one had their mucsles and joint lock up and she requires daily therapy to keep her joints in movable condition. Last I heard they had to wheel her to a pool to do it and it was just getting worse.

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Omg I too have neuropathy symptoms and I believe they say it is small fiber neuropathy that vax can give u. I am getting a punch hole biopsy to rule that out but I’m certain that is it.

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@susanh824

Hi all,
I was diagnosed with Sjogren’s Syndrome and fibromyalgia when I was 31. I am now 64.

About nine months ago, a weird pinpoint rash developed all over both calves. It itched like crazy, and never went away. My dermatologist tried creams and steroids, but neither worked.

At the same time as the rash developed, I lost all interest in food. Had to pretty much force myself to eat and drink protein drinks. Nine months later, I have lost 60 lbs.

Finally, my dermatologist prescribed Naltrexone, which cleared up the rash and itching, but did nothing for the appetite problems.

My doctor referred me to our local cancer center for a complete work up. They said that based on the tests I have already had done (colonoscopy, EGD, chest x-ray, CT scan of abdomen, x-ray of long bones) they can pretty much rule out cancer. But they strongly think my problem is autoimmune. They took ten vials of blood and I will get the results on Tuesday.

I have an app that allows me to see the blood tests when they come in. My TSH was way high and a lot of liver tests were wacky. But my ANA was negative!

I’ll update this on Tuesday.

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Well, a negative ANA ruled out autoimmune disorders. Now the are playing cancer roulette. My OB-Gyn is testing for ovarian cancer, gastroenterologist will probably do a CT scan and endoscopic ultrasound for pancreatic cancer. Looks like I need to be posting under another topic, but am not sure what.

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@becsbuddy

@z4pper You sound down and frustrated. What physicians have you seen? And what major medical centers have you been to? I really do worry about you! Becky

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This is terrible situation. Can any of the mentor volunteers help her. She sounds like she is at her wit's ends. I am worried about her.

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