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

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?

REPLY
@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 !

REPLY

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. And I also have one other source that has proven to be functional. Check out Joel Wallach and his books 'Dead Athletes Don't Lie' and 'Dead Doctors Don't Lie' for cutting edge info on epigenetics and nutrition and how they effect everything in the body. Good luck!

REPLY
@z4pper

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. And I also have one other source that has proven to be functional. Check out Joel Wallach and his books 'Dead Athletes Don't Lie' and 'Dead Doctors Don't Lie' for cutting edge info on epigenetics and nutrition and how they effect everything in the body. Good luck!

Jump to this post

Oh my goodness, @z4pper I sure wish I knew about this when I went a year and a half with no diagnosis for what turned out to be non-alcoholic cirrhosis. I live in southern NH so Mass General became my transplant center (liver transplant 09.23.2016), and Mass General is affiliated with Harvard. I learned from my experience, that if I don't get a diagnosis in a reasonable amount of time I will head to Boston. Pretty much all of my health care is there now except for my PCP due to convenience.

When I discovered that I had cirrhosis and was able to research the symptoms I discovered that I had so many red flags it was ridiculous that it was not diagnosed. My PCP had no idea. The PCP I had initially thought I had Alzheimer's due to the episodes of confusion! I changed PCPs after that. I was also under the care of a hematologist due to my platelet counts decreasing. Finally, I was sent to a neurologist due to the confusion episodes and he was the one who suggested it was a liver problem.

I will definitely save this information.
JK

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@oldkarl

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.

Jump to this post

Been trying to figure it out myself for 3 years. This is my last option.

REPLY
@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?

Jump to this post

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.

REPLY
@becsbuddy

@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.

Jump to this post

Yes! In fact it was that very show that led me to this organization.

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@z4pper

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.

Jump to this post

@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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@z4pper

Been trying to figure it out myself for 3 years. This is my last option.

Jump to this post

Actually, let me amend that. I do have more options. It's just that this is my last good one. It jus sounds like you picked a crappy doctor. Not every doctor walks on water. Some people have different experiences and different stuff going on with them. So if they are like me, and at their wits ends. A good direction is better than none.

REPLY

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. 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!

REPLY
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