misdiagnosed

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#Misdiagnosed #Undiagnosed #foeverfighter #lovethyneselfP .E.R.I.O.D #ucntforceme2ntcrbtme

I am not just a paycheck. I have genuine health conditions that should cause anyone concerns.

I have been suffering from chronic and debilitating pain for years. The victim of other's causing me hurt, harm and much danger. Either by their physical hand or an automobile.

Being allergic ALL FORMS OF ANTIBIOTICS MOST OF MY LIFE & still doctors prescribes it know the damage it will cause me.

At the age of 54, I can really tell you some medical suffering stories that I've experienced just for care and still being medically messed up after being UN(NO CARE)DIAGNOSED OR MIS(WRONG) DIAGNOSED.

I almost died Xmas/New Years 2022. Going to Specialist 2 and 3x's a week because NO MEDICAL PROFESSIONAL CAN AGREE ON WHAT IS WRONG WITH ME BECAUSE THEY REFUSE TO LISTEN TO THE PATIENT. LETS START THERE!

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I think I’m autistic. Help.

I think I’m autistic. It would make so much sense. What do I do? Who do I see? I’m dealing with multiple mental health issues (co-morbid and probably misdiagnosed), so there’s no way to draw a line between them. They bleed into each other. I told my psychiatrist, but autism is not his specialty at all. Other people have tried to comfort me by telling me I’m not, as if it’s bad to be autistic. No. No it’s not. I want a friggin’ diagnosis (doesn’t have to be autism) so I can understand myself and explain to others what is going on. I have a psychiatrist and a therapist LCSW. I think I need a psychologist. Any advice?
#Depression #Bipolar2 #BipolarDepression #ObsessiveCompulsiveDisorder #ADHD #Anxiety #Autism #AutismSpectrumDisorder #HighlysensitivePerson #Misdiagnosed

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What’s been your experience with getting a second opinion?

Receiving a diagnosis can be a monumental relief, but what happens when the diagnosis doesn’t seem to match your experiences or expectations? Health care providers are not always right, and they don’t have all the answers (though sometimes they do!).

If you’ve ever been unsure or doubtful of a diagnosis you’ve received from a health care provider, have you seen another provider? What’s been your experience with getting a second opinion? Share your experiences in the comments below.

#Undiagnosed #Misdiagnosed #MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #BipolarDisorder

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Grief, Struggles, Depression (Wash Cycle Doesn’t End)

I started my #Recovery journey in 2014 and I found a new way of life immediately. No one warned me the NEW was NEW Chapters of Life, Chapters which would not finish before the next starts….
In 2014 I had to have a #lumpectomy from my right #breast .
In the beginning of 2015 I was served #Divorce papers. By the end of the year we reconciled.
In 2016 when I should be excited my eldest is graduating from High School, simultaneously my second born had to have #OpenHeartSurgery .
In 2017 second born lost his first grandmother and I got to fly him from CA to ME to see her take her last breath.
In 2019 I was the proud #homeowner with my #husband of 10 years. We were finally making the #americandream .
In April 2020 I get a phonecall my father has had a #brainstemstroke I had to come home to Maine to assist with #lifeendingchoices .
In May 2020 my Mother is diagnosed with #OvarianCancer .
I am now temporarily living with my mother, being a #Caregiver , yet my #husband #mycaregiver #Abandoned me and then requested to take #fullcustody of #ourdaughter via the #Divorce .
In July 2021 my Mother sadly passed away. I have become an #Orphan too quickly. #Grief and #Depression is all too real now.
In March 2022, My second son has now come down sick. Doctors spend months trying to figure out why. It takes until July 2022 to diagnose him with #Sepsis #Endocarditis he spends 2 weeks #hospitalized and another 8 weeks on a #PiccLine at home.
In Dec 2022 he is given a clean bill of health and decides to come live with me in #Maine .
In Feb 2023 he starts to become tired easily, slight cough, and finally passed out in March.
March 10th he passed out at home. We called #911 and the #localer #Misdiagnosed him.
March 13th I took him to #mainemedicalcenter where he was hospitalized for 7 days with #Pneumonia and possible #Endocarditis where he was then transferred to #boston .
March 19th upon arriving to #brighamwomanhospital - #shapirocardiovascularcenter he underwent dozens more blood testing, procedures, exams, etc.
Today March 27th he is having #OpenHeartSurgery Number 2 to replace the pulmonary valve, pulmonary conduit, remove large vegetation.
In a couple of days as scheduled I am also supposed to exchange visitation with my daughter so I can visit with her for Spring Vacation. However my ex is trying to knit pick about my schedule and if I have ample time to spend with our daughter while my adult son is in ICU. Our daughter is 11 years old.
I really feel in the last multiple years I have had one catastrophic event after another without time to process.
I have other things like major moves, loss of therapists, and other medical mental health issues. I am so exhausted today scared sick for my son.
I am so annoyed how some people enjoy kicking others while they are down.
I don’t even know when I am going to sleep again right now. I have so many thoughts, concerns, to do’s in my head - I can’t sleep it is going to drive me crazy.
I am so sick of being in a chapter book that doesn’t let the chapters end.

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New member & looking for answers due to complex case

#Porencephaly #story #exhaustion #help #Misdiagnosed #underdiagnosed #complexcase #26years #symptomlist #rejected #Support #LongPost

(If you took the time to read this your amazing, seriously!)

Hi. My name is Nick. I'm new here. As much as I loathe this, I'am a complex case. I've been dealing with an unusual dilemma. I get diagnosed with one set of diseases, then getting a second & third set of diagnosis that don't seem related to the 1st set of diagnosis. What do I mean? The genetic test are the first set of results. Then the porencephaly with other incidental findings are the 2nd set of diagnosis with the 3rd and most recent set being due to my throat symptoms: adult dysphagia, adenopathy, & neck crepitus with manual right shift of trachea." I can't be overthinking this but, I can't shake the feeling something is wrong possibly beyond the scope of porencephaly. I got accepted by nord for the campaign but that was about it. My rare disease submission never got posted & I got turned down by my geneticist for further testing with the remark of "There's nothing else I can do for you." *Even though I made mention of my cousin having a cyst that causes speech issues.* ( thanks alot.) Sigh* depressed face*. Oh well, guess I look forward. Along with neurology & spinal specialist in may I now have an neck ultrasound with possible echogram later this month on top of an ENT in late April. One might argue I'm doing this to myself but that would be the partial truth because I let something possibly dangerous get away with tearing me apart even though all the symptoms are painless.

Why? Why this sudden deterioration in health as of a year or so ago? All the waiting has lead to partial answers. I almost want someone to sit down & figure out what I should focus on treating & what needs to be ignored. Sometimes I wake up thinking about wanting to make a model train set or traveling to a distant place & enjoying it. Too bad the former is expensive & requires too much space for our basement. The latter doesn't happen enough for me.

I'm exhausted & ready to just give someone all my records/history & just say "figure it out." I've been wanting this to be over for a good while now but new things keep coming up & I feel like some time soon I'll stop going to doctors because I don't want to deal with the process of getting surprise diagnosis ten.

I've had issues since birth with a neonatal stroke that we now know has turned cystic & has given us a piece of it's mind having been through many doctor visits throughout my 26 years of my family & me searching for answers. Here's the rundown: List of symptoms

Larygnomlacia-infant historic

Tinnitus-started at age 15

Tmj-age 15

Eye tilting up-age 15

Floaters-age 15

Dysphagia*~2019 couldn't swallow liquid properly.

Pinched nerve in neck~2021 got better with chiropractic intervention diagnosed as pots.

Neck/throat clicking same time as dysphagia & pinched nerve. Got better with chiropractor but still have some dysphagia & throat clicking.

Feeling of food being stuck in throat*~2019

Recently diagnosed adenopathy, esophageal dysphagia, & neck crepitus.

Chiropractor caused spinal lean with digestive upset in early 2022. Digestion is ok now. But posture lean is still an issue.

Recently diagnosed through mri & x-ray with porencephaly (brain cyst) this took 26 years to diagnose, mucous retention cyst, hemosiderin deposit, choroid plexus cysts & scoliosis of upper region with mild lumbar retrolisthesis.

Grip weakness- started after leaving chiropractor in Feb. 2022

Alarming rate of deterioration from being relatively healthy to needing cane due to posture lean. Most recent symptom is waking up to my left arm on my chest & having difficulty keeping it straight.

There was a change in walking pattern as of a few years ago due to coordination challenges since toddlerhood.

At birth I had a neonatal stroke looking like a premiee at full term. There was an undescended testicle (corrected at 6 years), 2 small holes in heart that healed on their own, microcephaly concerns, intrauterine growth restriction though grew out of it very quickly to 6ft 3in, & thrombocytopenia at birth.

Have strabismus, nystagmus, hyperopia, optic blurring in right eye.

Posture lean causes opposing foot to stand on toes.

Followed closely as a child but was dropped when we moved states in 2011.

Been in colorado since june of 2017.

Use to have sensation in left arm of pulling sensation when peeing.

Genetics testing according to the geneticist is insignificant but carrier for cep290 maternally & have chromosome 4p31.3-32.1 microduplication syndrome paternally with unknown significance which falls under chromosome 4p duplication syndromes (only 85 in the world.)

Also have unusual anal quivering (seldom talked about)

Have seen multiple doctors including neurologist (seeing one in may.), 2 physical therapist, 3 chiropractors, , neuropsychologist (childhood), on my 3rd primary doctor & genetics. I'm also seeing a spine specialist in May.

In tears* someone help me put this all together because it's destroying me!

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Misdiagnosed Bell’s Palsy

Six years ago, I acquired facial nerve palsy which was diagnosed as Bell’s Palsy. Problem is, my neurologist told me that since my facial palsy was caused from a trauma, that it cannot be classified as Bell’s palsy since Bell’s usually heals on its own within a handful of months, as well as is caused from unexplained reasons.

When my neurologist told me that it’s been six years since my injury, and the likelihood of it healing was slim since it would have healed by now…it really hit me hard. I’m very angry that I was misdiagnosed with Bell’s and also, that if I was given the proper diagnosis sooner, perhaps something more could have been done to correct this palsy.

I’m researching options on possible ways to help correct the palsy. Any thoughts?

#FacialParalysis
#Misdiagnosed
#SeventhNervePalsy
#FacialPalsyTrauma

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Why don't antidepressants and therapy work for me and my depression? Is it something else, C-PTSD or Autism?

I have lived all of my 64 years (that I can remember) being depressed. I didn't know what it was until my 20s, and read a book called REALITY THERAPY which described my symptoms very well, and offered me hope for the first time. I started therapy soon after, but living with depression ever since.

I have been in regular therapy since that time, and have had a wide variety of therapists, and a wide variety of antidepressants in those years. I'm currently on Effexor XR 300mg per day, and have been for over 10 years. It seems to have worked better for me than others I had in the previous years.

Still, the best that I ever feel is what I think 'normal' people feel when they say they're depressed. I call it "neutral", although when I'm questioned by a therapist or doctor, they classify it as 'depressed'. For me, that "neutral" state feels like a huge relief, and a time to freely exhale, and otherwise let my body loose, and to relax. But like I said, the doctors say that I am still depressed then, just not as much as I usually am.

Twenty years ago, a new doctor told me that the reason I wasn't getting better was because I was misdiagnosed, and he diagnosed me with Bipolar type 2. I started on Depakote as a mood stabilizer, and stayed on antidepressants as well. Then came a diagnosis of ADHD, and I have been on Ritalin ever since. I spent decades on the combination and still fought depression every step of the way.

Last year I was switched from Depakote to Lithium, at a high dose, and because doctors didn't check my blood levels each month, I ended up with severe Lithium toxicity, and near death. I was taken to a hospital with a Trauma Center a hundred miles away, and spent the next week there hooked to three IVs, and constant medical attention. I'm still recuperating at home.

My current psychiatrist doesn't agree with the previous Bipolar 2 diagnosis, but thinks it may be something else. C-PTSD seems to fit in a myriad of ways with me. But now I am wondering if even some level of Autism fits with me. It's hard for me to tell what might be actual symptoms that I have, and what might just be coincidences.

If my depression is not coming from 'depression', per sé, but is coming from C-PTSD or Autism, would that explain why the antidepressants and talk therapy over the years have never truly gotten rid of it? Or does it not make any difference, and I'm just whistling in some dark alley somewhere? I don't really have much hope any more that things can ever get any better. ♧


#TreatmentresistantDepression
#Depression #ChronicDepression #Bipolar2Disorder #ADHD #Effexor #lithiumtoxicity #lithium #Misdiagnosed #BipolarDisorder #neurodiverse #MajorDepressiveDisorder #Depression #SocialAnxiety #AdultDiagnosis #AutismDiagnosis #BipolarDisorderDiagnosis #Autism #UndiagnosedAutism #TheNationalAutisticSociety #AutismAcceptance #Anxiety #PTSD #CPTSD #PTSDSupportAndRecovery #ComplexPosttraumaticStressDisorder #Selfdiagnoses

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New to Mighty!

Hello my lovelies! After months trawling around reddit and google looking for affirmations, communities and answers, I didn’t realise The Mighty existed until a dear friend pointed me in your direction. I’m a freelance writer who has been misdiagnosed with Bipolar for a decade, despite explaining many of my symptoms to doctors that have NOTHING to do with chemical imablances and much more to do with trauma.

I am doing research on how people who struggle with undiagnosed or misdiagnosed mental health issues explain their perspective and daily experiences to family, friends, loved ones and medical professionals. I would love to know from you, what metaphors and analogies do you use to explain the world from your perspective?

The project focusses on the experience of ‘symptoms’ of mental health disorders, rather than experience of a ‘disorder’. So for example, if you think you experience Bipolar Disorder – I would love to know how you explain ‘mania’, ‘depression’ and ‘racing thoughts’. If you experience Schizophrenia, how do ‘delusions’ and ‘hallucinations’ feel… or with depression, how does ‘fatigue’ or ‘withdrawal’ feel. Misdiagnosis and misunderstandings are rife within psychiatry, as mental health conditions are

Living with a misdiagnosis or not understanding if a diagnosis is right for you can be crippling and many disorders have so much overlap it can be hard to know where to start, or where you fit in to the picture! I thought having a resource that spans across all of this would be so productive and useful.

I have created a group (although I'm very new to this and a bit discombobulated!), or you can let me know right here!

It’s great to meet you all and can't wait to hear your stories.

Rachel

#Undiagnosed #Misdiagnosed #Writing #livedexperience #Depression #Anxiety #BipolarDisorder #DID #Schizophrenia

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Sometimes Patience Isn't Enough

I'm just getting more mistake by the day. My joints hurt, all of them, and I'm staying to pull muscles because of it. I'm so exhausted all of the time but can't seem to get any good sleep. I just want to feel okay. I want to know what's won't with me. The last rheumatologist I saw just labeled it fibro after the second 5 minute session with me. At first I believed her, but as things progress, it doesn't seem to fit. I'm waiting for a referral to go through to a new doctor that I still then have to wait a month to get into. I'm just sitting here screaming on the inside, feeling so helpless. I don't want to be patient. I'm months pay being patient. How am I expected to just live like this?

#ChronicIllness #Undiagnosed #Misdiagnosed #Anxiety #Depression #Fibromyalgia

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If you was a professional dancer or something else that needed a flexible body & you now live with chronic pain, please read.

You MAY have hypermobility spectrum disorders... This is a underdiagnosed set of conditions ranging from hypermobility that becomes painful, all the way to connective tissue illnesses that are genetic. They could cause issues throughout the body. Please check the Beighton score & EDS Support UK.

#FibroFog #Fibromyaliga #ChronicPain #Undiagnosed #Misdiagnosed #Depression #Anxiety #MentalHealth #FunctionalNeurologicalDisorder #hypermobilityspectrumdisordersawareness

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