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What's New in diagnosis
Community Voices


Hey, I'm new here. I'm technically not medically diagnosed with Lupus yet, but I'm fairly certain its what has been ailing me. My ANA test was positive and my Dual Strand DNA test was indeterminate so my Dr. is retesting me in November. I'm really struggling with simultaneously coping and trying to get my Dr. to believe that something is wrong with me. It makes me frustrated when I'm in pain or feel so exhausted that even just speaking is painful. I thought that at least with the positive ANA test she would start to come around, but that hasn't really been the case. Hoping for proper test results and a diagnosis later this year. It just makes me nervous that if I'm not tested during a flare they will be negative and she will say nothing is wrong with me.
#ChronicIllness #Diagnosis #Waiting #Lupus #ChronicPain

2 people are talking about this
Community Voices

Change in diagnosis #Bipolar2Disorder #Diagnosis

My psychiatrist changed my diagnosis from severe depressive disorder, panic disorder and OCD to Bipolar 2. I am having a tough time linking the symptoms and processing what it means. Has anyone else experienced this? What did you do?

7 people are talking about this
Community Voices

Sleep Deprived EEG Tests

I’m going to be having an eeg test soon for the first time. I just found out its a sleep deprived one.

Have you had this test and can you tell me your experience with it? I’m wondering why the neurologist ordered this kind (sleep deprived) specifically.

Did it get you and your doctors closer to proper diagnosis? #EEG #testing #Nerve and joint pain #neurologist #Diagnosis #mobility #Tinnitus #Epilepsy #ChronicPain

31 people are talking about this
Community Voices

My journey of 3 years and still no end

A post on the pain of #Scoliosis reminded me of my 3 year journey of non-#Diagnosis where it seems scolosis has played a part.
Now I am quite #Disabled with many different items, but I'm just focusing in on May 2019 and its aftermath.
An aftermath that is not yet completed.
In May 2019, amidst the height of covid, I was taken to A&E with what turned out to be a #pulmonary #embolism , causing my right heart ventricle to be swollen and my lungs damaged.
On blood thinners I joined the pulmonary #Hypertension and the lung clinics. Investigations of various complexity and risk ensued and the thinner is now for life as they could find no reason why I throw blood clots.
Lung function tests showed I had little breath and wheezed and panted and coughed.
But no reason could be found.
After 2 years my heart and lungs seem to have stabilised. No further inflammation or increase in damage. But still I have no breath.
At this point a consultant mentioned how low my #Oxygen levels were when I was flat in a scan and suggested I go to a sleep clinic to see if I have sleep #apnea .
I was duly sent for test 1. When considering the results, the doctor mentioned that my scoliosis was no doubt impacting my ability to breath.
I thought how interesting, especially as it seemed to be on the move, judging how tight and painful my muscles were and how my shoulder dipped even further.
Just fyi, adult scoliosis has no treatment. No steel corset. No operation. Just bear with it. And see an osteopath or sports masseur.
But still, my oxygen levels overnight are too low.
And now I am back at the lung clinic. To see if I have asthma. I am given increasing levels of a drug for over an hour to stress my airways and bring on asthma. Mine it seems is very mild. This is not the answer.
I have #Hypoxia but how is it caused?
No answer is yet forthcoming. 3 years on and still more clinics and yet more tests.
I admit to being frustrated and #depressed as my GP rightly says,by my health or lack of it. I wake up in the night again and again. My muscles cramp. I can't get comfortable. And get up in the morning slowly with no energy for the day. And no oxygen in my blood it seems!

Community Voices

Finally compiling a master list of traits

I'm finally mustering up the courage to create a master list of all the reasons I suspect I might be autistic. Doing so has given me the bravery to even write that sentence even on a platform where I'm an anonymous stranger.

Maybe if I'd started this earlier, I would've saved myself a year or more of obsessing, but maybe that time was necessary to finally prepare myself to do this. I've got a therapy break for the summer while I'm living out of the country, but I'm hoping that by the end of the summer my list will be in a state that I feel alright with giving to my therapist. The fear that I'll be told that everything is just my OCD is strong and horrible, but the more I hear others' stories and reflect on my own life, the more certain I am that I'm at least in the ballpark of correct.

So far I only have an explanation of how I got to this point as well as a list of sensory issues and stims, and I think that documenting the other things like social experiences, childhood habits and such (the stuff I'm less rock solid certain about) will be emotionally exhausting. But I'll keep working on this bit by bit, and it's in Google Docs so I can add to it any time another piece of evidence occurs to me even if that's in the middle of my work day or while I'm at the grocery store.

I hope this winds up being a good thing. If anyone wants to share their story with me in a comment, especially other adult diagnosed women, I think that might raise my confidence :)

#Autism #ObsessiveCompulsiveDisorder #SocialAnxiety #Diagnosis #SelfDiagnosis #sensoryprocessing

Community Voices

Reminding myself how strong my body is

<p>Reminding myself how strong my body is</p>
Community Voices

New Diagnosis

29.08.2019 (a message sent to a friend):
“I think I suffer from BPD

16.05.2022 (said by a doctor in person*):
“I’m diagnosing you with Emotionally Unstable Personality Disorder. Do you know what that is?”

* = I cannot remember the exact words, but this was the gist of it

BPD is called EUPD here in the UK. I was told this a few months ago when I first started the fight for a diagnosis. I didn’t realise how long I suspected it until the other week, when I found the original message expressing my concern to my best friend.

I didn’t get the opportunity to suggest it to my doctor until I moved away from home. And after that, I had to gain the strength to ask about it. A diagnosis is final. I can’t think it’s something else when I get diagnosed. But, saying “I might have BPD” to explain my difficulties gets tiring. I wanted the certainty, not living under a self-diagnosis.

I have no issues with self-dx, especially since it’s what I had to go by for almost 3 years. However, being self-dx meant that it was just that. There was no certainty, I couldn’t argue if someone said “are you sure?” (thankfully no-one did), I couldn’t get help related to it. And I ultimately just felt uncomfortable.


I wasn’t expecting a diagnosis today. Last time I mentioned it, the doctor didn’t seem keen, saying it could be bipolar disorder instead, among other potentials. Today was just supposed to be an appointment that messed around with my medication and looked at previous contact with the mental health services.

But I twigged about halfway into the appointment. When she started asking the questions. I met the 5 criteria she mentioned, and she didn’t have to mention any others. Even when I said one was probably a trauma response. I guess it was both.

It didn’t make it any less surreal when she said the words though. After 3 years to be told that yes my suspicions were right.

I’m not sure how a diagnosis will change things in terms of help. I thought maybe I would be able to be put on medication to perhaps regulate my mood, but apparently medication isn’t very effective. And I was already put on the waiting list of DBT. I guess we’ll wait and see.

#BorderlinePersonalityDisorder #BPD #EUPD #Diagnosis #SelfDiagnosis #DBT

7 people are talking about this
Community Voices

How did getting diagnosed with C-PTSD affect you?

<p>How did getting diagnosed with C-PTSD affect you?</p>
20 people are talking about this
Community Voices

How did you receive your C-PTSD diagnosis?

<p>How did you receive your C-PTSD diagnosis?</p>
22 people are talking about this