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For anyone who can't find a diagnosis: Undiagnosed Disease Network
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!
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Thank you. So far no help .
I have an appointment at Mayo Rochester but not until late January. I’m sure you know how difficult every day is living with a sickness no one can figure out. Still searching for someone to help. It will be 4 years in December
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4 ReactionsHi, been through the mill. Foggy brain and balance issues over 2 years.. Been tested like a lab rat, same old sentence " your bloodwork is normal not sure what it is, maybe you should see this one or this one....mri's, Ct's each specialist rules out their area. None have bothered to talk to each other. Nothing worse than feeling unbelieveable. Confused about which Mayo location can help or where to start. Winter is coming, not rich cannot stay in hotels etc. Where to start? Any help would be so appreciated..
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1 ReactionHello @kittykelly1234 and welcome to Mayo Clinic Connect. I am sorry about the disappointing news with UDN, but am glad to hear you have an appointment in January. At this point, I am sure that feels like a lifetime away so I can understand your frustration.
In the meantime, what you do you find comforting to focus on in anticipation for your appointment? What is most challenging?
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2 Reactions@kittykelly1234 ,
So glad you have the Mayo appointment. I was rejected there 3 different times. The last time was my GI doc’s referral. How did you manage to get in?
My Doctor in Florida wrote a letter to a neurologist there. I had that appointment and then I was able to arrange for a physical. Not easy but now that I’m in I am I’m the system I am able to see doctors there. They have been really backed up due to COVID last year. Not looking forward to going to Rochester at the end of January . We have to drive since I can no longer fly.
Maybe you can try getting another doctor to write or call in for a referral. ?
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2 ReactionsI have been at this for almost 4 years. I understand your frustration as well as not being well. How can I help?
Hi Kitty I don't know how you can help. I don't know where to begin. I live in Denver don't want to waste time and money going to Minnesota if I can't get any help.
I am going on 4 years of research. Have you assembled a file and organized testing and medical visits?
I just came across an interesting website Dx29 pretty easy to use. It’s a long shot but you enter your symptoms all of with anything you have been diagnosed with like for example low white blood count, etc and then it matches your symptoms to some rare diseases. Like I said it’s a long shot. But worth it.
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3 ReactionsThank you kitty that's so sweet of you I'll give it a whirl when I get home. You take care of yourself.
Hi Kitty, Im new to this forum. Thanks for the website dx29 recommendation. Did you get any help by using it? Just curious. I tried it today and felt like it could be helpful. I’ve been u diagnosed for years and I’m more than desperate. Thx again.