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.

pj7753 | @pj7753 | Sep 12, 2022

In reply to @pj7753 "Hi Kitty, Im new to this forum. Thanks for the website dx29 recommendation. Did you get..." + (show)

Oops meant undiagnosed

gillysmom | @gillysmom | Sep 13, 2022

In reply to @pj7753 "Oops meant undiagnosed" + (show)

So many diseases are said to result from the Epstein Barr Virus. It might be worth checking out the literatre to assess the effects of a chronic EPV infection, and if it applies to you. This possibility is what I'm concluding about myself. I think the Moderna CV vaccine suppressed an already severely impaired immunee system and reactivated an old EMB viral load, which I believe is contributing to extreme malaise and breathlessness along with my other chronic autoimmune symptoms. EBV also affects body pain and inflammation. Just the idea of following EBV healing to a logical conclusion has raised my hope about eventually overcoming 8 months of being bedridden.

pj7753 | @pj7753 | Sep 13, 2022

Oh I’m so sorry about you being bed ridden. I’m there myself. Its hard to adjust to. My spirit wants to move but my body won’t let me. I was tested for ebv and it was high but i don’t understand how to read it and my doctor didn’t seem to concerned about it. (My pcp). I plan on trying to get to the Mayo Clinic when I have better insurance that covers out of state. Thx for ur response. I really appreciate it. It’s going on years and many specialist and it’s hard to stay motivated. I hope and pray you will get answers soon and live life to the fullest again(and even better!)❤️

Becky, Volunteer Mentor | @becsbuddy | Oct 4, 2022

In reply to @donnasantella "Hi, been through the mill. Foggy brain and balance issues over 2 years.. Been tested like..." + (show)

@donnasantella I answered a question you had in another discussion. Then i saw this one. You sound like i did before i was finally diagnosed. So many trips to the ER because I couldn’t stop vomiting and all they did was give me some fluids and pat me on the shoulder. But we kept persisting. My husband knew i was really sick. I had to ask my PCP’s work partner for an MRI referral (my own PCP didn’t think i needed one). The MRI showed that I was right, that there was something very wrong.
Don’t give up. Keep advocating for yourself. Do you have someone who goes to appointments with you? Someone who also suspects that things aren’t right? They can back up what you say. Have you seen a rheumatologist—the younger ones have been educated in autoimmune diseases.
Do you think you can keep trying? Be sure to stay in touch-I care

linh | @linh | Oct 5, 2022

I can attest to the low oxalate cure. I once was a ball of pain, unable to get much in the way, if any sleep for what seemed like months. I presented over this time to a assortment of doctors to no avail (Note: not treated at Mayo). At work (an unbelievable struggle at this time, I went directly to the E.R. after work once and they ran a drug screen! That is how off the mark they were. It was negative of course.) I happened to meet someone with an extensive history of kidney stones. I asked them - You don't happen to know a good doctor that deals with this (stones) do you? They said - Yes, as a matter of fact they did and they worked in the same small building complex I did. I beelined over to their office during break and booked an appointment. I saw his nephrologist and she put me on a strict low oxalate regiment. Two weeks later I was sleeping just like a baby. Among the numerous pains I had suffered before visiting this nephrologist, was persistent right flank pain, so that was what had tipped me off.

z4pper | @z4pper | Dec 7, 2022

In reply to @clutch "@amandaburnett, Have you applied to the UDN? What was your experience? Did you receive a diagnosis..." + (show)

Ah yes, it took a while, but I did apply and they looked at my medical profile. They said about a dozen doctors looked through it.

They said that it seems as if it was an autoimmune disorder so I should check out a Rheumatologist. It definitely set me on the right track.

One MRI later and we found a mass inside my sinus cavity. Turns out it was leaking odd bacterial strains down my throat and threw off my entire gut flora. So one surgery later and a Low FODMAP diet plan and things seem to be getting better.

Had to get in touch with a functional medicine doctor in order to see any improvement tho. No amount of antibiotics, steroids, or pills were working. Sorry it took so long to get back to you.

jholland | @jholland | Dec 15, 2022

Shouldn’t take all that. Doctors don’t care anymore

irishponies | @irishponies | Dec 16, 2022

very interesting - worth investigating - will report back results of contacting them thank you

clutch | @clutch | Dec 16, 2022

In reply to @z4pper "Ah yes, it took a while, but I did apply and they looked at my medical..." + (show)

@amandaburnette, thanks for the reply. Glad to know that helped and you are on your way to improvement! Were you actually evaluated by the UDN team, in person? Or did they just consult and suggest the rheumatologist? Did they recommend Functional Medicine or did you decide that on your own? Also, which team of UDN specialists were you working with?
Just as a side note, I was trying to get in with the Duke Medicine UDN group. I had been seen in several specialty clinics at Duke, so decided to ask one of those providers for the referral letter. They turned me DOWN! Actually I thought their excuses were pretty flimsy, so I suspected it was ego-driven in part. I could be wrong, but I certainly did fit the criteria.