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For anyone who can't find a diagnosis: Undiagnosed Disease Network
Autoimmune Diseases | Last Active: Jan 27, 2023 | Replies (63)Comment receiving replies
Honestly, I don't have any other options. It's either do or die. And I can feel it edging ever closer every day. Truth be told, I fret about dying every day. And every week it just gets worse. I break down, and sometimes I get so frustrated I have to punch something. I keep wondering if I'll even make it to the next month. And yet, the next month always comes, and I still continue to get worse. The only thing keeping me going right now is my faith and my knowledge of how things are interacting with my body. I've had to relearn things, glean new info from the experiences I'm having, and learning to cope with new symptoms and disabilities. The other day the right side of my face went numb and it grew difficult to try and move it. But after several seconds it went back to normal. In that instance, I don't recall being terrified, I just thought, "oh, this is a new one." And just contemplated as to why it could have happened. Got an MRI and there is still no answers. Still 30 years of age and sometimes I have to crawl to get to where I need, or have someone brush my teeth for me. It's devastating, yes. But it's good to be able to have people around who care and can assist me when needed. It would be far scarier without them.
I get by, by controlling what I know I can control (which isn't much). But doing, that. Focusing on the things I enjoy, and trying to help others that are trying to find answers, forms a sort of comradery. It's comforting to know that other people are fighting for their answers too, and perhaps if they find their answer, it could be your answer too. It's easier to fight if you have people by your side.
Replies to "Honestly, I don't have any other options. It's either do or die. And I can feel..."
POSTED BY SOMEONE IN NEUROPATHY GROUP: 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.
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@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