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    Hi, sorry if this is a dumb question. Can you be diagnosed with epilepsy if you only have auras? I read that an aura in itself is a type of seizure.?

    I’ve had an eeg that showed some abnormal activity involving my temporal lobe. Thanks, Zel.
    #auras #EEG #Diagnosis #Epilepsy

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    One step closer? #Diagnosis #ChronicPain #ChronicFatigue

    Yesterday I saw my PCP and after 5 years since I heard term, I am being sent to Mass Gen to meet the genetics team about #EhlersDanlos . You never hope to be sick for a diagnosis but man, what a relief it will be to have a name for all the crap I go through on a daily basis. #hopingforanswers #Alwaystired #alwaysinpain

    46 reactions 16 comments

    My undiagnosed illness symptoms

    Here are my symptoms at the moment:

    Weight gain

    - Previously I was always on the thin end of the spectrum now on the overweight boundary

    - Have been passively been trying to loose weight for 18 months (usually I barely have to try to loose weight)

    - Average exercise 30-60mins/ day

    - I look pregnant

    - None of my clothes fit anymore

    Brain fog

    -Can’t concentrate

    - Poor memory

    - Feels sludgy, no smooth thoughts

    - Almost constant headache

    Frequent illness/ infections

    - Getting ill once a month with a cold/ flu something like that

    - Have developed nasal polyps as a result

    - Recovery slow avg 2-3 weeks which means I’m ill 50-70% of the time

    Absolutely exhausted

    - Could sleep for England Sometimes struggle to get to sleep

    - Can easily sleep well over 12hrs but up to 24hrs at a time

    - Difficult to get up in the morning, everything heavy

    Loss of libido

    - 3-4x per week down to 1x per month

    Nipple discharge

    - Started in January 2022

    - Can be clear, milky or clear with yellow in it

    - Often spontaneous after a shower

    Numbness and tingling in hands and fingers

    - Palm of right hand feels like ice is being rammed into it. Almost feels like the nerve is exposed and cold but it doesnt hurt and there’s not anything I can find that helps

    - Left hand pinky and ring finger often go numb

    - Often comes in waves where it will be almost constant for a few days or weeks then subsides for a bit

    Temperature sensitivities

    - Often too hot or too cold and struggle to get to the right temperature without swinging too far the other way

    Loose, clicking joints

    - My ankles are always giving way and often hurt for days after a particularly bad roll

    - Many joints click when I move and I sound like a 1 man band, in particular my knees

    - The arch of my right foot clicks but I don’t think there’s any joint or anything there to click?

    Skin changes

    - Lots of bruises that I don’t know where they came from

    - Spots particularly on chest also more acne on my face than I had during teenage years

    - Fragile skin that tears if I take a plaster off

    - Purpura and pietache

    - Stretch marks on my sides and thighs

    Bowel changes

    - Swing between constipation and almost loose/ diarrhea

    Hair thinning

    Slow healing of wounds

    Recent additions

    - Longer, heavier periods (14 days and bleeding through onto clothes started 6-9 months ago)

    - Twitchy muscle thing

    - Can feel blood in my legs

    - Intermittently feels like I have a UTI for a few hrs then it goes away

    - Bone in my lower leg hurts (both sides)

    Test results

    - Normal pituitary MRI

    - Nasal polyps found on MRI

    - Normal ovaries (NOT PCOS)

    - mild anemia which worsened with heavier periods

    - Normal WBC even when ill

    - High IgA and IgM with normal IgG and recent EBV infection

    - Negative ANA

    - intermittently elevated liver enzymes, negative liver antibodies

    - Negative HIV

    - TSH mid of normal range, T4 on lower end but normal

    - CRP normal, ESR borderline

    - high Phosphate swings between high and low but usually low and rarely normal

    - Intermittently but usually high estrogen, DHEAS, testosterone, cortisol, LH

    - Low good cholesterol (slightly), all other cholesterols are normal

    - Normal vit D, platelets, urea, electrolytes, albium, calcium, HbA1C, B12

    If anyone has any suggestions of things to look into that'd be really helpful.

    #Undiagnosed #chronic #ChronicIllness #chronicallyill #searchingforanswers #Gaslighting #Answers #Diagnosis #Testresults #symptoms

    2 reactions 1 comment

    Trigger warning* not sure if allowed to post I feel maybe I have some Bipolar condition as well as my anxiety

    I don’t think I actually am but sometimes I wonder, I know only a professional can diagnose me I think it’s just really bad highs and lows with life changes/ stressors etc. but it happens so often and during the week sometimes I don’t know if my extremes could be something else or not. Was just curious if others who know they have bipolar disorder or are officially diagnosed with it could explain a bit how it is for them? Thanks.

    I’ll seek a psychiatrist or doctor to evaluate
    Im only diagnosed with
    And depression etc

    Thanks appreciate any help.
    I think I’m just having a tough time right now and I just need to get some help which I’m setting up, but just wanted to hear from others who do struggle with other disorders bpd, ocd, anxiety, depression, or in particular bipolar.

    I’m pretty sure I’m having more than my one or two diagnosis but can’t tell what it is

    Thanks for any help, but I will seek an evaluation and get some help to confirm. #Bipolar #Diagnosis #Unsure #confused #struggling #Trying #Crying #panic #Doctor #Psychiatrist #Hope #help #Depression #Anxiety #MightyTogether

    6 reactions 2 comments

    Why We Need To Change The Conversation Around BPD For Counselors-In-Training

    I have a secret. One that began in the behavioral health unit of a hospital, and has haunted me ever since. I am diagnosed with Borderline Personality Disorder.

    When I first received this diagnosis, I was horrified. I could not be a “manipulative borderline”, or an “unstable borderline”, phrases I had heard time and again in reference to people with BPD. Yet, here I was, receiving the diagnosis of Borderline Personality Disorder. I was crushed.

    I left the hospital a wreck. Not only was I recovering from a suicide attempt, but I was now a dreaded “borderline”. How was I going to face my professors and classmates in my counseling graduate program? They had heard the term borderline and feared it. How was I going to return to my life, how could I expect people to respect me? I was marked. Worse, I was borderline.

    Enter my therapist. He met me where I was and did not judge my BPD traits and anxious mannerisms. He saw what a diagnosis of BPD really is: a person in pain. With the support of good therapy and close family and friends, I have been able to know recovery.

    However, my fears of judgement by the medical community and beyond were not completely misplaced. As a student studying to be a counselor, I have heard the way many professors and counselors-in-training refer to those with BPD, and it is not positive. BPD and those diagnosed with it still experience significant stigma within the mental health community. This is in spite of research which has found that it is treatable. The counseling community as a whole, particularly those in the profession who teach or mentor counselors-in-training, needs to reconsider its view on BPD and how it is presented in the classroom. Had BPD been presented to me as a severe but treatable illness, I may have been more open to my diagnosis and received help sooner. Instead, I was terrified of being labeled a monster.

    It is the job of our clinicians and counseling faculty to learn and begin introducing the truths of BPD. It’s a diagnosis of pain that presents through turbulent emotions and behavior. Remission is possible and there is hope. Borderline Personality Disorder should not be a clinical death sentence. It should be the start of proper treatment and a chance at recovery.

    I am so thankful to have had a therapist that could see my humanity, and for friends and family that saw and see me as far more than any diagnosis. The conversation around Borderline Personality Disorder can change, and it starts with counselor education and, by proxy, the education of the public. The narrative can change, just like those diagnosed with BPD can and do get better. Let’s change the conversation around BPD, starting in our counselor education programs and moving out into the world.#BorderlinePersonalityDisorder #BPD #MentalHealth #Hospitalization #Diagnosis

    3 reactions 2 comments

    How did you know? #Undiagnosed

    How did you know something was wrong and how did you know what questions to ask your doctor?

    (For context, I am in my mid-thirties.)

    15 years ago, I was working a heavy janitorial job one summer and I developed serious pain in my hands and wrists. It was so bad that my hands were screaming if I just tried to grip a zipper and zip up a hoodie, for example. I tried physio therapy, but it made a minimal effect. Then that same summer I was in a car accident and got soft tissue damage to my left thumb and wrist. It took nearly seven years for that to more or less get back to normal. Even now, if I knead bread, chop a lot of veggies, scrub the bathtub, etc. both my hands feel stiff and sore the next day.

    I first started to notice some knee and hip stiffness 5 years ago. Nothing major - just couldn't comfortably sit with crossed legs (crisscross applesauce) on the floor anymore. Since 2014, I have also been having some difficulty with swelling in my feet, ankles, and lower legs during (mostly) long flights or bus journeys. Now, the swelling happens within just a couple hours in a car or if I am on my feet in the kitchen for more than three hours. I think I have some permanent swelling at the top of my knees, too.

    Last night, I spent an hour catching up on washing dishes, and when I woke up this morning, I felt like I'd been hit by a truck. I know people say that when you hit your thirties, your body starts breaking down, but this can't be normal.

    Both my parents have arthritis and my paternal great aunt had multiple sclerosis. There is also a lot of cancer (many different kinds) within my family, including immediate family members.

    In October, I convinced my doctor to requisition a blood test and he did an "autoimmune panel", but he hasn't followed up. One of the values was slightly out of range, but, knowing him, he would probably just dismiss it. I get such bad anxiety doing phone appointments with him that I certainly don't want to call and ask him to follow up.

    So. Should I be concerned? Is this just normal body-falling-apart-in-my-thirties?

    #Undiagnosed #Adviceplease #Arthritis #MultipleSclerosis #JointStiffness #Diagnosis #MentalHealth #Depression #Anxiety #ComplexPosttraumaticStressDisorder

    5 reactions 5 comments
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    #Spiritual #hashimoto

    Have you ever think about the #Spiritual cause of your #Diagnosis ?

    I think it can be really tricky but exciting to puzzle our #Disease out...

    Let's think together. We're not #alone .👥

    I'v read many articles about #hashimoto (my "friend"😉). As I try to remember the years before the start of my disease, I felt so many times -you know- "lump in my throat" when I've experienced awkward situations and #emotional traumas.🤐

    I'm truly believe that our body, mind and soul are in close connection with each other and you can not abuse any of them without affecting the other. ☯️

    Unfortunatelly I've ignored the smyptoms of my body and soul too long. But noe I'm trying to look inside and fbd my inner peace again. 🌸

    What's your opinion? Share with me, share with us. ❤️

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    mental health journalism - late autism diagnosis for women and AFAB

    Hi everyone! I'm a journalism student at Northwestern University and I've recently worked on a feature piece on late autism diagnosis for women and AFAB. I would really appreciate some guidance to magazines that you all think would publish my piece without editing it too much, as this topic is very important and personal to me and I am tired of seeing it misrepresented in the media. #Autism #Journalism #Diagnosis #AdultDiagnosis #Media