Hello all!! Okay going deep/serious here but I'm curious: What did you have to unlearn about authority figures to advocate for your health?

I’m going through this right now 😢 the past 5 months has been a nightmare and I do literally feel like I’m losing my mind!  I’m a nurse as well so I guess I understand how your videos have made their way to my algorithm and I’m so thankful that they have last week only after very firmly telling my neurologist that I need to have a lumbar puncture that I was told I was gonna have back two months ago finally came back with a positive MS panel the MS that the neurologist told me I didn’t have I only had migraines and an anxiety depression problem, to which I responded you lose your ability to drive your job and all your independence and you tell me whether or not you’d be a little bit depressed ?!?! even with four generations on the same side of my family with MS but hey, what do I know? Anyways, I’m finally starting to feel heard because I swear I felt like the entire healthcare system was trying to gaslight me.
Sorry for the rambles, but I just wanted you to know just how much of a difference you make🩷

I presented my symptoms to my PCP for over 12 years. He kept telling me, “You’re getting older”.  His final comment to me before I stormed out of his office was, “It’s all in your head.” I sought out an appointment with the neurologist that my friend recommended. It took 2 weeks to get in. Two weeks later, she had my diagnosis of MS. I attribute this to her listening and ordering the correct tests.

You are absolutely correct.
On my FIRST appointment at Neurologist I was referred to (and waited 5mos to be seen) this Doctor actually wrote in my Medical Chart (online, that every one of my docs has access to and it’s how we communicate) that I was “Paranoid about her health” (!!!)!
Keep in mind I had a relative in the room WITH me as I need help now.
Docs do NOT want a patient who asks pertinent questions, or (God forbid) you have any sort of medical experience/worked in a hospital etc as they REALLY dislike that as well.
It happens all the time - especially with more unusual or rarer illnesses…
I seriously thought I was nuts!!
For about 10 seconds, then I got pissed.
It’s beyond frustrating, and the more you’ve written down (I have a big binder & notes plus I take PICS of everything that can be seen on my body as far as symptoms- muscle spasms, etc etc) & I’m just about hopeless now.
So much so that I’ve written a “document” stating (cliff notes version) of what I believe I have, ALL my symptoms, photos, etc so that when I die the Dic that will do my autopsy I asked to please take that into account & test me.
I’m dead serious.
I’m progressively getting worse in every single area, I wear 2 smartwatches (as it shows/backs up what I’m saying as well) to make certain all info is corroborated!
I would think I’d be an easier patient as I’m very motivated to not croak!!!
Regardless, I cannot change the situation just set up ANOTHER consult that happens on October.
It’s gotten to the point I keep a bag packed & ready for hospital/ambulance, recent updated list of meds & ALL supplements (I always bring that one up & get Ok’s from docs so all are aware), and printouts of every single visit  consultation. ER/hospital stays, even regular appointments have printouts discussing visit & anything done.
Still, it happens.
I’m praying the October appt Doc will look at entire pic instead of just wanting symptoms r/t their particular specialty!!!
Thank you for all that you share, post and educate us all about;  it’s deeply appreciated.

I was diagnosed after 12 years of chasing down an MS diagnosis.  It took a neurologist, who for the first time in a long line of them, bothered to ask me, 'What do you think it is?'

I was diagnosed five days ago by him.  He listens.  He asks what you think and feel about it all. He knows we aren't doctors, but we can read, so we do and we have questions.

Keep a detailed journal of your symptoms.  If they are dismissing it as anxiety, get up and walk out the door.

Don't give up. Your best advocate is always yourself.

Last month I had a doctor tell me that it was because of childhood trauma, specifically "I saw someone murdered" when I was young.  Thank you for this video.

I kept saying I was feeling more anxious and thinking I had ADHD. I was having trouble getting things done.  I was tired.  My Dr. upped my dosage of Lexapro and said I was Bipolar.

A month later I was experiencing numbness and tingling down my right arm and told it was stress and inflammation. I went back to the doctor again days later because it was getting worse thankfully he said he would order an MRI to give me peace of mind.

The 1st MRI showed a lesion in my spinal cord. I was just diagnosed last week and am waiting on labs for medication

Took me 15 years of pain, a divorce, and moving to a large city with better doctors to get a diagnosis. Before that, they told me everything was in my head and put me on all kinds of psychological meds which was torture. If it had been caught earlier I maybe wouldn't be in daily chronic pain. I'll never forget or forgive.

Before my MS diagnosis, everything which was probably due to MS was said to be caused by something else. After my diagnosis, everything was part of my MS, and that was even with a father who was an MD. If I had an ear ache it was because of my MS, even if there was puss and blood draining from it. Dad was a strong advocate, and if I was getting brushed off by the docs here, he'd send me to a well-known specialist in another city about an hour away. There they always took me seriously and were always right on top of it. After Dad died, though, my door to those docs closed, and I had to live with the docs we have here.

"That's interesting, but not relevant...." said my FORMER doctor.

These delays cost me more than 20 😬

Thank you so much for this x

You can get MRI's which aren't high enough resonance that can / may show a tumor but not MS lesions, a medical technician informed me long ago. One neurologist was angry at the "nonsense" mention of possible MS (after his dx of essential tremor & several other things which weren't correct). Later MS specialist neuro did an MRI & pointed out several add'l. Brain lesions other scan missed. I didn't "want" to have those problems, the problems existed. Low-dose naltrexone helped me tremendously.

Thank so so much Erin! I have told my Doctor many years ago about me having a Grey tint in one of my eyes, and he just changed the subject and never told me about it.  But with your video here. You just answered my question! It's Optic Neuritis! Thank you so very much! I have learned so much from you!!!

Looking back at my childhood, I realized that my latest relapse manifested the very same set of symptoms, which I had since I was say 10 years old: weakened balance, slower and uneasy digestion. And that was no short-term issue, it stayed present forever, only the intensity of these symptoms is worse for a few months and milder for another few months.
My first clearer symptom (MS-doctors usually know it nowadays, definitely not at all back then) came up when I was 22: I call it "the only positive MS-symptom", being a guy it suddenly took me an hour of intense humping to finish. Young doctor said: "I have no idea what exactly is causing it, but it is surely something bad". Prevailed for 7 years. Got diagnosed shortly after, when heavily impaired balance and double vision came up. Am 51 yo now, managing my treatment for the past 12 years, can still walk. One trick is multilingualism :yougotthis:

Been battling with many of these symptoms almost 9yrs some present before my brain injuries and then others after. So I dont know if FND or MS and feom stuff ive seen in videos lately they can have overlapping symptoms. Things have become worse and supposed to have a new neurologist 4.5hrs from home next month. Hopefully this one will be better and no more gaslighting and figure thsi stuff out. Even if it's not MS I'll still appreciate your videos and the fact that you help me try to figure rigth way to talk to be taken seriously

Can you please tell me if you have ever heard of a symptom of MS being dizziness/lightheadedness?
When I stand, I get lightheaded, my head gets foggy, my hands and arms get tingly/numb, pressure in my head.  No doctor can figure it out.
I do have MS, but not sure if this is caused by it?

❤enjoy your images and video clips for emphasis. Question:  I’ve had several recent eye exams. Dr. hasn’t diagnosed a ‘optic neuritis’ from what you reported, it can be missed? I haven’t been diagnosed yet w/MS.

I remember when my wife was first diagnosed in qld Brisbane Australia we had a close family friend who was one of first clinics  where M.R.I machines were available for everyday people sadly my wife's M.R.I result washer whole nerves system from head to toe was riddled in multiple holes which is aggressive M .S  no cure just m..s  non aggressive has a good chance of healing simallr to ross river fever where for as long as you have ross  river take sametime to heal I always argued was m.s man made because of years how cancer was advertised daily yearly and those years I ne er beard of m.s

I know that my doctor thinks I'm making "more of this" than she is. But I finally got her to agree to a brain MRI, which I'm having next Monday. On Wednesday, we are going over it together. If she doesn't see anything, I'm going to ask for a second opinion. I have both fibromyalgia and Ehlers Danlos syndrome, both of which overlap with MS. But I also have intermittent foot drop, which has even caused a bone fracture over a year ago. Now, she is, either not aware of that, likely, or she simply doesn't care, also likely. I'm done playing games. I'm going to rule in/out MS, one way or another!