misdiagnosis

Join the Conversation on
misdiagnosis
506 people
0 stories
56 posts
Explore Our Newsletters
What's New in misdiagnosis
All
Stories
Posts
Videos
Latest
Trending
Post

Misdiagnosis or possibility?

It felt as if my life had literally been turned upside down when I was diagnosed with spinal stenosis two years ago. Not such a big deal you may think but I was told to stop running which was truly my sanity.

My BPD and MDD need as much help as they can get and running was it for me. My BPD had become a lot worse over the years and running had restored some stability and enjoyment in my life.

A radiologist and neurosurgeon confirmed the diagnosis as did a spinal surgeon a year later. I was told that it would get worse, that surgery may be an option in the future, told to do lots of stretching, take a pile of pills every day and get on with my life. As advised, I stopped running and felt as if my world had collapsed. BPD on overdrive.

Fast forward to a month ago. The neurosurgeon requested a follow up MRI and told me last week that there is now no sign of spinal stenosis! What??? As I understand it, it isn't curable so what is going on?

I did the fish mouth thing when he casually mentioned this and eventually asked him what had happened to the spinal stenosis diagnosis. He dismissively mumbled something about 'looking at that' and changed the subject. I could not concentrate on anything he said after that. Duly dismissed. By the end of the consultation he had still not offered a possible explanation and considering his dismissive attitude, I was reluctant to ask again.

For the past two years the possibility of this progressing and impacting my mobility have made me extremely anxious. I have a son who has many mental health challenges and requires a certain degree of care. I have worried myself sick about the possibility of not being able to do this in the future. Now it is not even or was even a thing??

Has anyone had a similar experience with a spinal stenosis diagnosis or know whether it can heal? #stenosis #stenosisspine #confused #Misdiagnosis

6 reactions 3 comments
Post
See full photo

Liz's Bladder Cancer Story: Misdiagnosed at the Emergency Room

By Editorial Team

3 min read

Last updated: June 2020

The Editorial Team at bladdercancer.net is highlighting people in the bladder cancer community. We talked to Liz who shares how she was diagnosed with bladder cancer.

Liz looks at the camera

Liz's bladder cancer story

At around age 38, I gradually began experiencing urinary issues – urgency, increased frequency, nocturnal accidents and bladder spasms.

I presented to a local emergency room several times as I was without insurance at the time and I did not have an established PCP to go to. I was brushed off with very little testing as “Oh, you just have a UTI or bladder infection. Here’s some meds. Come back if it doesn’t go away.”

Read the rest at bladdercancer.net/living/misdiagnosis-emergency-room

#BladderCancer #Misdiagnosis #healthcarefail #healthunion #bladdercancerdotnet

Misdiagnosed With UTIs Before Bladder Cancer

Liz experiences urgency and blood clots in urine. She is misdiagnosed with UTIs at the Emergency Room. She later learns it was bladder cancer.
Post

How do I talk to my Dr?

So I think I may have eds as it explains a lot of my unexplained symptoms and even some things that I've noticed my whole life but didn't know were indicators of eds.
I'm worried my Dr will dismiss my concerns because I have other health conditions triggered (at least that's how it seems) by a car accident--how do I get them to take me seriously?
Here's the things I've noticed:
1. Based on the information I can find I definitely have hypermobile joints.
2. I have always bruised easily and have so many bruises constantly that I never know where they're all from.
3. I have soft skin and have often been told I look a lot younger than I am.
4. I have multiple times where I have been told I have micro tears in muscles or tendons (in my shoulder and foot most recently).
5. And finally, I feel like this is what's missing and why I have felt unsatisfied with the other diagnoses that I have because they haven't ever explained all my symptoms the way I think eds would.

#EhlersDanlosSyndrome #Misdiagnosis #ChronicPain

24 reactions 22 comments
Post

Misdiagnosis? #PosturalOrthostaticTachycardiaSyndrome #AnorexiaNervosa #ChronicPain #Misdiagnosis #Undiagnosed #teenager

I was recently diagnosed with POTS, after a lot of appointments, but something doesn’t feel right to me. My main symptom is pain in my legs and arms, a lot of the dizziness and lightheadedness doesn’t seem to apply to me. I also feel like my previous history with anorexia shadowed my doctors diagnosis… I trust her, and I know she is very educated. However, my gut is saying it’s something else. Does anyone have any advice? I’m also willing to talk more about my symptoms if anyone has an idea that might not be POTS…

1 reaction 2 comments
Post
See full photo

Wellness Wednesday: Latent Autoimmune Diabetes In Adults (LADA)

For this Wellness Wednesday, I want to share my story about Latent Autoimmune Diabetes in Adults (LADA).

LADA is a slow form of type 1 diabetes that occurs after the age of 30. It is often misdiagnosed as type 2 diabetes.

It took me almost three years to receive a correct diagnosis.

Contact your healthcare professional immediately if you don't see results from managing your diabetes, your blood sugar levels are creeping up without making any changes to your current diabetes management plan or your symptoms and risk factors are consistent with LADA.

LADA: When It’s More Than Just Type 2 Diabetes

type2diabetes.com/living/lada-diagnosis

❓ Have you been tested for LADA?

Share your thoughts and experiences in the comments 👇🏾

#Diabetes #DiabetesType1 #DiabetesType2 #prediabetes #GestationalDiabetes #lada #ChronicIllness #AutoimmuneDisease #HealthCare #Misdiagnosis #Support #SupportGroups #MightyTogether

LADA: When It's More Than Type 2 Diabetes

Hear a patient leader's story with misdiagnosis & latent autoimmune diabetes in adults (LADA).
1 comment
Post

Ever Been Misdiagnosed? #Misdiagnosis #medicalgaslighting #StiffPersonSyndrome #CommonVariableImmuneDeficiency

Just curious, have you ever been misdiagnosed?

If so, how did that label effect how you were treated by medical professionals?

Did it have any long term consequences such as difficulty obtaining disability?

Considering writing a short story on the negative impacts of being misdiagnosed. My experience led to years of delayed necessary treatments, medical gaslighting, and Inability to obtain disability.

6 comments