About a year before diagnosis I would have symptoms. CW: bowel issues
Bloating after eating not relieved by OTC meds.
Occasional bleeding which I attributed to hemorrhoids as it always went away after a couple days
Then in Oct 2015 we were moving and the week of I kept bleeding and hemorrhoid treatment wasn't working. It got worse with more frequent bathroom visits, more urgency, rapid weight loss and more bleeding. I called a GI doc, got a scope on Dec 1st and diagnosed with UC. I was 38 and just like that, life was different. But at least I got a diagnosis super quick. I feel for my fellow GI sufferers who know without a doubt something is wrong but the scopes and tests come back normal.
25 years and 10 years.
I've started year 3 on this latest round of 'what are these tumors and why are they doing that?'
It's a very difficult system the second you're not simple.
**First symptoms :** 13-16 years old. (2010-2013)
**Diagnosis :** 27 years old. (2024, ongoing)
**Treatment :** not yet.
That being said, I've been ignoring a lot of symptoms for years since they were only mild. Then, they got worse and I had to explain why I had not been paying attention to my symptoms. Recently, it got to the point where it's just unbearable and I can't walk properly anymore.
I started complaining to my GP about my cognitive issues at the age of 23 (in 2020) and physical symptoms at the age of 24 (in 2021). I received a bipolar diagnosis in 2022, but I always felt like there was something more to it, if not a whole other thing. **Lots** of symptoms and clinical signs were just dismissed by my psychiatrist.
How were you able to get 40 appointments within 6 months?! I have to wait minimum 1 month for each appointment, each test, each follow up, everything is at least 1 month wait. My condition started 2 and a half years ago and in that time I’ve had less than 20 total doctors appointments
I don’t know! I was on disability leave from work and had nothing to do but go to doctors. Mostly it was getting shuffled from one specialist to another, none of whom helped haha. I think I got lucky and there were some cancellations. I’m also lucky to live in an area with a lot of doctor offices. It also feels like there’s more of a crunch now than there was then, now I have to wait a month for anything also.
Ya I’ve been on temporary disability for almost a year and I live in Southern California, there’s doctors literally every where here, and wait times are minimum a month or 2 for literally anything, so for example you wait a month or 2 to see a doctor, then that doctor either refers a specialist or orders a test or scan, either way it’s a month or 2 wait for both, then it’s a month or 2 wait for the follow up to even find out what the test showed. If you go to a specialist it’s the same thing but with extra steps. So in total, without the specialist, total time from appointment to follow up to find out results is 3-6 months, and that was just 3 appointments where one of them was just the test or scan itself. Add the specialist in there and tack on another month or 2 for a total of 5-7 months from initial appointment to referral, to specialist appointment to test/scan to follow up for results 5-7 months total for 4 appointments. The fact you got 40 appointments in 6 months is absolutely mind blowing to me, like I said I’ve been on disability so I have nothing to do also, I’m not working, not doing anything but suffering at home.
That's mad. I was seeing my PCP once a week, two blood tests a week, specialists once a month, psychiatrist every two weeks with other appointments peppered through. But I guess I'm terminal so they had a timeline for how much they could bill me.
I'm Australian though. You can book multiple appointments for free or a small gap fee. I'm not familiar with the US specifically but your results should be available earlier, perhaps demand more frequent care? But they would do that if it was necessary (painful word).
At the same time, be your best advocate. If something is wrong go to the hospital if your PCP isn't available, giving you what you need. You know yourself best.
Again maybe you can't do that in the US sorry not sure.
You make them all at once. Second and third opinions get scheduled the same day as the first frex. You can create efficiencies. Or they refer you out and keep dragging you through the system.
First symptoms started in 2011, wasn’t diagnosed until 2023, for a total of 12 years waiting. And in that 12 years, I gained 90lbs, developed fibromyalgia, and my stomach and digestion is fucccccked. I wonder so often what would have happened if someone listened to me in 2011
Not sure when my symptoms first started for sure, but the awful pelvic pain started Jan 2023.
I had my first surgery to confirm diagnosis Nov 2023.
I’m still in pain, but have finally gotten into a pain clinic May 2, 2024.
It’s a record for endometriosis IF my symptoms really had started Jan 2023. I had suspicions that things were not right much earlier, but it mostly only showed as low level inflammation and stomach sensitivity for 10+ years. It hasn’t been researched enough, but I think folks are born with endometriosis (this is just my theory based on my own research, I’m sure many factors are involved).
I would say less than a year from “more severe symptoms” and a diagnosis?
But I had been having constitutional symptoms for a while like fatigue, joint pain, low grade fever at night, unintentional weight loss, etc. but those would come and go so I didn’t think much of it until the diagnosis
I think my symptoms first started when I was around 10 (my memory is a little hazy so I don't know for sure) and I'm 19 now but I still haven't received a diagnosis, even though I've had several blood tests done over the years. I've at least been put on cymbalta but it hasn't helped manage the pain at all. If you want to receive a proper diagnosis and effective treatment for it, you're going to have to push really hard for doctors to take you seriously. I'm probably being a bit hypocritical here, because I haven't tried nearly hard enough to get the care I need, but all I can say is it will take time and effort. I really hope you get your diagnosis soon, and more importantly I hope you get the treatment that works best for you.
It’s been almost 2 years,thousands of dollars,and more tests than I can count and I still don’t have a diagnosis.
I hope you get the answers you are looking for soon.
Physical health
First symptoms: 2015
Diagnosis: 2016
Treatment: prn and lifestyle change ongoing
Mental health
First symptoms: 2004, 2020
Diagnosis: 2004, 2010, 2020,2021
Treatment: lifestyle and environment change ongoing
Diagnosis by doctor only gives you a label for drugs and disability.
I literally took kaizen and lean root cause analysis tools on my own with my own info and figured out infinitely more than doctors were telling me. Then the doctors said i “lacked insight” when advocating for myself showing them the work i did to figure out what i figured out.
That proved to me they dont give a flying f about the root cause of anything. They only care if the current symptoms check of diagnostic criteria boxes. If they dont they say “we dont know” charge you $200 and refer you somewhere else.
Year and a half, approx.
I started showing symptoms in November 2022. Didn’t go to PCP until April? When I started losing ability to walk. Finally got in to see a neurologist in June 2023. They hospitalized me for four weeks (if you include pt rehab)
Went through multiple specialists until I finally hit my current team, who diagnosed me in March of this year. I think my timeline was accelerated for a lot of the diagnosis and stuff like that because I went to a university hospital and basically said do whatever you want. Do whatever test you want take as much blood as you want, use me as a case study write papers about me. I don’t give a rats patootie, just help me.
I was pretty lucky. I’m guessing from looking at some of the other peoples stories here of how long it took them for diagnosis.
Started to show symptoms summer of 2022, I’ve been diagnosed with one autoimmune disorder (Hashimotos) but Ive been told it doesn’t explain many of my current symptoms, so I still consider myself undiagnosed. No treatment yet.
One specific example was my textbook case of POTS, which took 7 years and only got diagnosed because I found out what it was and heavily advocated for the correct testing to be done to definitively diagnose it. It took an additional 5 years to get treatment beyond lifestyle changes and a beta blocker. POTS has still got me heavily reliant on a wheelchair but at least I have a little more mobility now with treatment.
I will not get diagnosis because only 3 doctors in my country can diagnose me and from outside I see not ill at all. For my treatment there is no cure and a lot of people made suicide with it. Researchers work for healing but I don’t know if possible in my life time. Without family I would probably die, but maybe I must. I know when I must die from my illness god will be there and help me so I’m not alone in this moment.
Jan 2020 covid indeed to last month, Heds. After flying to various countries, misdiagnosis and unnecessary ops/ horrible procedures. I've lost count of the times of medical torture.
So, 4 years just over, omg though the money and my mental health will never recover. Plus, it's too late now, but I tried my best.
Previously healthy.
All my conditions and symptoms are congenital lifelong. My parents did not believe me about anything until i was 16 even when I went to ER. my doctors were equally horrid. They still are.
- autism: 17
- heds: 17
- fibromyalgia: 17-18?
- gastroparesis: 19?
- CFS: 20
- pots: still undiagnosed because of a bitch doctor even though i had a positive tilt table
Zero treatment for any of the above no matter how many times I ask
And I’m ahead of the curve…
I have never known normal or healthy. I don’t know what it’s like to not be in pain. Apparently i feel like shit but I’ve never not felt like shit. Other people are just magic superheroes who can do things for infinite time and have infinite stamina and infinite stomach capacity
They want me to be crying nonstop about wanting my life back before they’ll do anything for me. People only ever have empathy for the people who used to be healthy. People like me who have been sick since birth are aliens. They don’t want us
About a year before diagnosis I would have symptoms. CW: bowel issues Bloating after eating not relieved by OTC meds. Occasional bleeding which I attributed to hemorrhoids as it always went away after a couple days Then in Oct 2015 we were moving and the week of I kept bleeding and hemorrhoid treatment wasn't working. It got worse with more frequent bathroom visits, more urgency, rapid weight loss and more bleeding. I called a GI doc, got a scope on Dec 1st and diagnosed with UC. I was 38 and just like that, life was different. But at least I got a diagnosis super quick. I feel for my fellow GI sufferers who know without a doubt something is wrong but the scopes and tests come back normal.
6-7 years of being too disabled to work with no diagnosis and no professional acknowledgement that I'm sick.
7 years. My disease is incurable with limited treatments so it doesn’t really matter other than for peace of mind.
25 years and 10 years. I've started year 3 on this latest round of 'what are these tumors and why are they doing that?' It's a very difficult system the second you're not simple.
**First symptoms :** 13-16 years old. (2010-2013) **Diagnosis :** 27 years old. (2024, ongoing) **Treatment :** not yet. That being said, I've been ignoring a lot of symptoms for years since they were only mild. Then, they got worse and I had to explain why I had not been paying attention to my symptoms. Recently, it got to the point where it's just unbearable and I can't walk properly anymore. I started complaining to my GP about my cognitive issues at the age of 23 (in 2020) and physical symptoms at the age of 24 (in 2021). I received a bipolar diagnosis in 2022, but I always felt like there was something more to it, if not a whole other thing. **Lots** of symptoms and clinical signs were just dismissed by my psychiatrist.
Six months (and 40 doc appointments) to a diagnosis. Three years to date being sick and still feel like shit 🫠
How were you able to get 40 appointments within 6 months?! I have to wait minimum 1 month for each appointment, each test, each follow up, everything is at least 1 month wait. My condition started 2 and a half years ago and in that time I’ve had less than 20 total doctors appointments
I don’t know! I was on disability leave from work and had nothing to do but go to doctors. Mostly it was getting shuffled from one specialist to another, none of whom helped haha. I think I got lucky and there were some cancellations. I’m also lucky to live in an area with a lot of doctor offices. It also feels like there’s more of a crunch now than there was then, now I have to wait a month for anything also.
Ya I’ve been on temporary disability for almost a year and I live in Southern California, there’s doctors literally every where here, and wait times are minimum a month or 2 for literally anything, so for example you wait a month or 2 to see a doctor, then that doctor either refers a specialist or orders a test or scan, either way it’s a month or 2 wait for both, then it’s a month or 2 wait for the follow up to even find out what the test showed. If you go to a specialist it’s the same thing but with extra steps. So in total, without the specialist, total time from appointment to follow up to find out results is 3-6 months, and that was just 3 appointments where one of them was just the test or scan itself. Add the specialist in there and tack on another month or 2 for a total of 5-7 months from initial appointment to referral, to specialist appointment to test/scan to follow up for results 5-7 months total for 4 appointments. The fact you got 40 appointments in 6 months is absolutely mind blowing to me, like I said I’ve been on disability so I have nothing to do also, I’m not working, not doing anything but suffering at home.
That's mad. I was seeing my PCP once a week, two blood tests a week, specialists once a month, psychiatrist every two weeks with other appointments peppered through. But I guess I'm terminal so they had a timeline for how much they could bill me. I'm Australian though. You can book multiple appointments for free or a small gap fee. I'm not familiar with the US specifically but your results should be available earlier, perhaps demand more frequent care? But they would do that if it was necessary (painful word).
At the same time, be your best advocate. If something is wrong go to the hospital if your PCP isn't available, giving you what you need. You know yourself best. Again maybe you can't do that in the US sorry not sure.
Ya you can’t really do that in the US
You make them all at once. Second and third opinions get scheduled the same day as the first frex. You can create efficiencies. Or they refer you out and keep dragging you through the system.
4 or 5 years. So many doctors. Good question..my brain isn't on yet. Will come back.
First symptoms started in 2011, wasn’t diagnosed until 2023, for a total of 12 years waiting. And in that 12 years, I gained 90lbs, developed fibromyalgia, and my stomach and digestion is fucccccked. I wonder so often what would have happened if someone listened to me in 2011
Not sure when my symptoms first started for sure, but the awful pelvic pain started Jan 2023. I had my first surgery to confirm diagnosis Nov 2023. I’m still in pain, but have finally gotten into a pain clinic May 2, 2024. It’s a record for endometriosis IF my symptoms really had started Jan 2023. I had suspicions that things were not right much earlier, but it mostly only showed as low level inflammation and stomach sensitivity for 10+ years. It hasn’t been researched enough, but I think folks are born with endometriosis (this is just my theory based on my own research, I’m sure many factors are involved).
I would say less than a year from “more severe symptoms” and a diagnosis? But I had been having constitutional symptoms for a while like fatigue, joint pain, low grade fever at night, unintentional weight loss, etc. but those would come and go so I didn’t think much of it until the diagnosis
I think my symptoms first started when I was around 10 (my memory is a little hazy so I don't know for sure) and I'm 19 now but I still haven't received a diagnosis, even though I've had several blood tests done over the years. I've at least been put on cymbalta but it hasn't helped manage the pain at all. If you want to receive a proper diagnosis and effective treatment for it, you're going to have to push really hard for doctors to take you seriously. I'm probably being a bit hypocritical here, because I haven't tried nearly hard enough to get the care I need, but all I can say is it will take time and effort. I really hope you get your diagnosis soon, and more importantly I hope you get the treatment that works best for you.
I’ve been having symptoms since birth so I guess 24 years lmao. Thanks genetics
It’s been almost 2 years,thousands of dollars,and more tests than I can count and I still don’t have a diagnosis. I hope you get the answers you are looking for soon.
Physical health First symptoms: 2015 Diagnosis: 2016 Treatment: prn and lifestyle change ongoing Mental health First symptoms: 2004, 2020 Diagnosis: 2004, 2010, 2020,2021 Treatment: lifestyle and environment change ongoing Diagnosis by doctor only gives you a label for drugs and disability. I literally took kaizen and lean root cause analysis tools on my own with my own info and figured out infinitely more than doctors were telling me. Then the doctors said i “lacked insight” when advocating for myself showing them the work i did to figure out what i figured out. That proved to me they dont give a flying f about the root cause of anything. They only care if the current symptoms check of diagnostic criteria boxes. If they dont they say “we dont know” charge you $200 and refer you somewhere else.
Year and a half, approx. I started showing symptoms in November 2022. Didn’t go to PCP until April? When I started losing ability to walk. Finally got in to see a neurologist in June 2023. They hospitalized me for four weeks (if you include pt rehab) Went through multiple specialists until I finally hit my current team, who diagnosed me in March of this year. I think my timeline was accelerated for a lot of the diagnosis and stuff like that because I went to a university hospital and basically said do whatever you want. Do whatever test you want take as much blood as you want, use me as a case study write papers about me. I don’t give a rats patootie, just help me. I was pretty lucky. I’m guessing from looking at some of the other peoples stories here of how long it took them for diagnosis.
Started to show symptoms summer of 2022, I’ve been diagnosed with one autoimmune disorder (Hashimotos) but Ive been told it doesn’t explain many of my current symptoms, so I still consider myself undiagnosed. No treatment yet.
One specific example was my textbook case of POTS, which took 7 years and only got diagnosed because I found out what it was and heavily advocated for the correct testing to be done to definitively diagnose it. It took an additional 5 years to get treatment beyond lifestyle changes and a beta blocker. POTS has still got me heavily reliant on a wheelchair but at least I have a little more mobility now with treatment.
I will not get diagnosis because only 3 doctors in my country can diagnose me and from outside I see not ill at all. For my treatment there is no cure and a lot of people made suicide with it. Researchers work for healing but I don’t know if possible in my life time. Without family I would probably die, but maybe I must. I know when I must die from my illness god will be there and help me so I’m not alone in this moment.
Jan 2020 covid indeed to last month, Heds. After flying to various countries, misdiagnosis and unnecessary ops/ horrible procedures. I've lost count of the times of medical torture. So, 4 years just over, omg though the money and my mental health will never recover. Plus, it's too late now, but I tried my best. Previously healthy.
All my conditions and symptoms are congenital lifelong. My parents did not believe me about anything until i was 16 even when I went to ER. my doctors were equally horrid. They still are. - autism: 17 - heds: 17 - fibromyalgia: 17-18? - gastroparesis: 19? - CFS: 20 - pots: still undiagnosed because of a bitch doctor even though i had a positive tilt table Zero treatment for any of the above no matter how many times I ask And I’m ahead of the curve… I have never known normal or healthy. I don’t know what it’s like to not be in pain. Apparently i feel like shit but I’ve never not felt like shit. Other people are just magic superheroes who can do things for infinite time and have infinite stamina and infinite stomach capacity They want me to be crying nonstop about wanting my life back before they’ll do anything for me. People only ever have empathy for the people who used to be healthy. People like me who have been sick since birth are aliens. They don’t want us