A bit of constructive criticism, I almost died bc of a misdiagnosis not once but four times. Marfan Syndrome is what I actually have. Misdiagnosed with anxiety disorder and bipolar. Until I started passing out, lost 60 pounds in 3 months, what looked like seizures, and went into an every other bigeminy rhythm. Got a cardiac MRI which showed a Pectus Excavatum chest deformity, and given another misdiagnosis, Hypermobile Ehlers-Danlos Syndrome. Wasn't corrected until I almost died again from a uterine rupture during pregnancy, which led to yet another misdiagnosis of Vascular Ehlers-Danlos Syndrome. Finally started getting better on heart medicines and procedures. I was sent for genetic confirmation which showed an FBN1 Marfan Syndrome mutation, and an unrelated diagnosis of Type 2 Albinism. Still didn't explain everything though. Then, I lost 100% arm and hand function in my left arm and hand, and in a wheelchair, both probably 20+ times over 8 years. Used to go away after a week or two, until I progressed so long without treatment because everything at this point got blamed on Marfan Syndrome because "it's so rare" excuse of nobody knows enough about it. Now, it's permanent loss of function I have and I only got back about 50% of it with dialysis. Now, I'm in heart failure with severe POTS. Severe Osteoarthritis from a lifetime of joint dislocations. My ADHD and my Autism symptoms all are exacerbated by the 16 lesions in my brain and brain stem. Now, on disability with my coding career ruined. And now instead of RRMS I progressed into SPMS due to the negligence. So, the whole "if it looks like a duck, it quacks like a duck, it must be a duck," saying, well that easily can turn into a *deadly* misnomer so please doctors, proceed with caution there. Don't diagnose psych conditions either without testing people up and down physically first. Occam's Razor is used too much. And rare diseases aren't as rare as once thought. Healthcare refuses to diagnose them out of the fear for misdiagnosis so thus, rare. It is sayings like this duck thing and the hoof beats/zebra thing that lead the general public to not trust you. Thanks.
Omg you have been through so much I can’t even imagine. I’m so so sorry for you. I hope you have a good support system. I’m praying for you. I have never heard of Marfan Syndrome. You are a tough lady to have gone through all of what you have!
@@robinjessee8911 Thank you Robin I really appreciate this! A great way to start my day from your validation for what I have endured. You're great! Rare conditions deserve the care of simpler ones and I wish healthcare starts to do this as a staple thing going forward. 🙏
thank you for sharing your story. and i'm glad you specifically call out the overuse of occam's razer. it gets quoted all the time, but for the people who are personally affected by its over application, it's a matter of their lives being ruined by medical gaslighting and negligence.
I have an MS diagnosis but the medication made me feel awful so I stopped recently after two years. I was sick for ten years before my MS diagnosis. I have EDS, Chiari malformation, POTs. Pretty sure I have Lyme or something. But doctors don’t believe in that. Hearing loss, rashes... yes! But they don’t ask. I live in Ottawa by the way. Glad to see these presentations take place here because we need the help.
I haven’t had a full spine MRI since 2010. My diagnoses was based on a brain MRI and a spinal tap. My visual evoked potentials test was normal but I was still diagnosed and put on immune modifying medication. I regret taking it now.
Last night I took over a hour long brain 🧠 CT scan. I’m waiting. I forget to breathe , light head ake , burning on top of my head , and light head ake , quick pain in eyes or ears , that come and go , an electric shock in fingertips . Vomiting , sleeping 😴, bad thoughts get mad , so right now I’m waiting for a phone call. Adding my liver , and pancreas hurts , I have a nodules in my thyroid , and coughing . I’m waiting right now. So I’m where you was , am afraid 😱.
I wake up in pain and go to bed in pain. It has been hard for me this last 4 years which my life is so miserable. The first neurologist 4 years ago told me than an MRI was too expensive and that I had fibromyalgia. I just saw another neurologist and he said the MRI is too expensive too and that I should do physical therapy first, if PT do not work then will try to order an MRI. I am just so in Pain everywhere every day that I am tired of keep living with this pain!!!
Well diagnose these people with something , they are sick don’t just tell them it’s a mental issue to see a mental health doctor “ that a waist of their time “ these people are too sick to go gale venting around their town 🙏🙏🙏
Interesting lecture, Thank you, for broadening my knowledge, helping me to beter understand how to read my MRIs etc when going over them with the doctor...
I really enjoyed your presentation. I'm neurology resident in The Universitary hospital of Caracas Venezuela, I'll share your presentation with my partners. I have a dificult case with extensive lesions in her MRI, I would apreciate so much your help if you can. Thanks so much. Daniela.
I was diagnosed through a brain biopsy. I went through a living hell for about a month. I couldn’t walk, couldn’t talk, couldn’t swallow. I didn’t know who I was or where I was at! I thought everyone was just trying to kill me. I was finally scheduled for a brain biopsy and was diagnosed with MS. The doctors said there were too many lesions to count.
I ended up with c diff as well. Nothing easy with MS I struggle with relationships now, I have a very hard time with my eyesight and my speech. The expense of MS is astronomical. Not so much the disease itself but everything else we end up with. Tough disease
I have low tone hearing loss too. And high tone... that’s new since the Bell’s palsy. I have optic neuritis coming and going for a few years now. They really think it’s typical MS. I really don’t agree.
Same problem here. Had long-term infection in upper molar. Became infected, infection spread into Eustachian Tube, appears to have traveled into Middle Ear. - Since 2019, been having Balance and Dizziness Disturbance. It's chronic. Got Worse since 2021, tho the Emergency Room Doctors I go to , established my Patient Case Files as a MS Diagnosis. As consequence: Every Time I go to the doctors now, they almost immediately [Pull Me Into a MS Patient Assessment Profile], Though I Keep Telling Them: I haven't had Any Symptoms in any form since the 2016 MS Diagnosis; the product of what I believe to have been a Severe Analphlatic Shock, due to the Ingestion of a Very Moldy Blood Orange, that I ingested by Accident, thus..., when I used Statin Binders to clear the mycotoxins, what was left for a [Fungi Detect] when I went in, and they did a CBC.., 'Of Course they weren't going to see what I believe caused their MS Diagnosis.. ..Dumbasses.. Sigh. :\
Very sad the presenter could not be bothered to use the POINTER to the MRI areas at 12 minutes in for us NON neurologist watchers - it really would have been helpful to me at least.
The neurologist that i was seeing didnt think about anything except her wallet, which is why she is no longer my neurologist. Why do you only speak of rrms???
They can try those, on the way to a neurologist. Have you tried yoga when your body is already literally falling apart? 🤨 You can pick their foot up in the carpark on the way out…
A bit of constructive criticism,
I almost died bc of a misdiagnosis not once but four times. Marfan Syndrome is what I actually have. Misdiagnosed with anxiety disorder and bipolar. Until I started passing out, lost 60 pounds in 3 months, what looked like seizures, and went into an every other bigeminy rhythm. Got a cardiac MRI which showed a Pectus Excavatum chest deformity, and given another misdiagnosis, Hypermobile Ehlers-Danlos Syndrome. Wasn't corrected until I almost died again from a uterine rupture during pregnancy, which led to yet another misdiagnosis of Vascular Ehlers-Danlos Syndrome. Finally started getting better on heart medicines and procedures. I was sent for genetic confirmation which showed an FBN1 Marfan Syndrome mutation, and an unrelated diagnosis of Type 2 Albinism. Still didn't explain everything though.
Then, I lost 100% arm and hand function in my left arm and hand, and in a wheelchair, both probably 20+ times over 8 years. Used to go away after a week or two, until I progressed so long without treatment because everything at this point got blamed on Marfan Syndrome because "it's so rare" excuse of nobody knows enough about it. Now, it's permanent loss of function I have and I only got back about 50% of it with dialysis. Now, I'm in heart failure with severe POTS. Severe Osteoarthritis from a lifetime of joint dislocations. My ADHD and my Autism symptoms all are exacerbated by the 16 lesions in my brain and brain stem. Now, on disability with my coding career ruined. And now instead of RRMS I progressed into SPMS due to the negligence. So, the whole "if it looks like a duck, it quacks like a duck, it must be a duck," saying, well that easily can turn into a *deadly* misnomer so please doctors, proceed with caution there. Don't diagnose psych conditions either without testing people up and down physically first. Occam's Razor is used too much. And rare diseases aren't as rare as once thought. Healthcare refuses to diagnose them out of the fear for misdiagnosis so thus, rare. It is sayings like this duck thing and the hoof beats/zebra thing that lead the general public to not trust you. Thanks.
Omg you have been through so much I can’t even imagine. I’m so so sorry for you. I hope you have a good support system. I’m praying for you. I have never heard of Marfan Syndrome. You are a tough lady to have gone through all of what you have!
@@robinjessee8911 Thank you Robin I really appreciate this! A great way to start my day from your validation for what I have endured. You're great! Rare conditions deserve the care of simpler ones and I wish healthcare starts to do this as a staple thing going forward. 🙏
Omg this is awful. I'm so sorry this happened to you. Bless you and your family ❣️
thank you for sharing your story. and i'm glad you specifically call out the overuse of occam's razer. it gets quoted all the time, but for the people who are personally affected by its over application, it's a matter of their lives being ruined by medical gaslighting and negligence.
I hope that you are OK and receiving treatment now?
I have an MS diagnosis but the medication made me feel awful so I stopped recently after two years. I was sick for ten years before my MS diagnosis. I have EDS, Chiari malformation, POTs. Pretty sure I have Lyme or something. But doctors don’t believe in that. Hearing loss, rashes... yes! But they don’t ask. I live in Ottawa by the way. Glad to see these presentations take place here because we need the help.
I haven’t had a full spine MRI since 2010. My diagnoses was based on a brain MRI and a spinal tap. My visual evoked potentials test was normal but I was still diagnosed and put on immune modifying medication. I regret taking it now.
Last night I took over a hour long brain 🧠 CT scan. I’m waiting. I forget to breathe , light head ake , burning on top of my head , and light head ake , quick pain in eyes or ears , that come and go , an electric shock in fingertips . Vomiting , sleeping 😴, bad thoughts get mad , so right now I’m waiting for a phone call. Adding my liver , and pancreas hurts , I have a nodules in my thyroid , and coughing . I’m waiting right now. So I’m where you was , am afraid 😱.
@@rhondaclark716 did you get a diagnosis?
@@rhondaclark716 I'm all the same things except for vomiting. Any luck on a diagnosis?
I wake up in pain and go to bed in pain. It has been hard for me this last 4 years which my life is so miserable. The first neurologist 4 years ago told me than an MRI was too expensive and that I had fibromyalgia. I just saw another neurologist and he said the MRI is too expensive too and that I should do physical therapy first, if PT do not work then will try to order an MRI. I am just so in Pain everywhere every day that I am tired of keep living with this pain!!!
Well diagnose these people with something , they are sick don’t just tell them it’s a mental issue to see a mental health doctor “ that a waist of their time “ these people are too sick to go gale venting around their town 🙏🙏🙏
I suspected MS, but thankfully my neurologist was familiar with ME/CFS and diagnosed me.
What where ya symptoms
It's scary the sle lupus flares I have are starting to have all of these MS like symptoms I see an neurologist next week.
Excellent information, thank you!
your apparently Welcome...
Interesting lecture, Thank you, for broadening my knowledge, helping me to beter understand how to read my MRIs etc when going over them with the doctor...
So glad you neurologists can find pretty little names for our pain.
Thank you for sharing this valuable information
very nice lecture thank you for your kind help
I really enjoyed your presentation. I'm neurology resident in The Universitary hospital of Caracas Venezuela, I'll share your presentation with my partners.
I have a dificult case with extensive lesions in her MRI, I would apreciate so much your help if you can.
Thanks so much. Daniela.
Sounds like what my friend has that runs in his family Cavernoma.
Excellent. Who is the doctor who is speaking?
I definitely have MS and it has destroyed my life
Don't say that pray hard lots of love stay strong x
I was diagnosed through a brain biopsy. I went through a living hell for about a month. I couldn’t walk, couldn’t talk, couldn’t swallow. I didn’t know who I was or where I was at! I thought everyone was just trying to kill me. I was finally scheduled for a brain biopsy and was diagnosed with MS. The doctors said there were too many lesions to count.
I ended up with c diff as well. Nothing easy with MS I struggle with relationships now, I have a very hard time with my eyesight and my speech. The expense of MS is astronomical. Not so much the disease itself but everything else we end up with. Tough disease
❤️
@@robinjessee8911 🙏🏾🙏🏾🙏🏾🙏🏾
I have low tone hearing loss too. And high tone... that’s new since the Bell’s palsy. I have optic neuritis coming and going for a few years now. They really think it’s typical MS. I really don’t agree.
Same problem here. Had long-term infection in upper molar. Became infected, infection spread into Eustachian Tube, appears to have traveled into Middle Ear. - Since 2019, been having Balance and Dizziness Disturbance. It's chronic. Got Worse since 2021, tho the Emergency Room Doctors I go to , established my Patient Case Files as a MS Diagnosis. As consequence: Every Time I go to the doctors now, they almost immediately [Pull Me Into a MS Patient Assessment Profile], Though I Keep Telling Them: I haven't had Any Symptoms in any form since the 2016 MS Diagnosis; the product of what I believe to have been a Severe Analphlatic Shock, due to the Ingestion of a Very Moldy Blood Orange, that I ingested by Accident, thus..., when I used Statin Binders to clear the mycotoxins, what was left for a [Fungi Detect] when I went in, and they did a CBC.., 'Of Course they weren't going to see what I believe caused their MS Diagnosis.. ..Dumbasses.. Sigh. :\
25:05 "So really normal MRI. Maybe a little bit xxxxx." -- What's the word for xxxxx? Couldn't hear clearly.
She said maybe a little bit of atrophy.
Hey ehab saed, Can I pay you to take a look at my MRI scans?
The arrogance of the medical community is unparalleled.
Truth!
Very sad the presenter could not be bothered to use the POINTER to the MRI areas at 12 minutes in for us NON neurologist watchers - it really would have been helpful to me at least.
Nevermind!
The neurologist that i was seeing didnt think about anything except her wallet, which is why she is no longer my neurologist. Why do you only speak of rrms???
What!!!??? No video?
To anyone who finds my comment please try yoga, turmeric and Asian genseng, Blessed Be.
They can try those, on the way to a neurologist.
Have you tried yoga when your body is already literally falling apart? 🤨
You can pick their foot up in the carpark on the way out…
Krista Belle: you should speak to a chiropractor and try the Mediterranean diet as well, Blessed be.
@@baronghede2365do you have ms? If not stop dispensing woo woo.
Are you serious??? Smh!
Cynthia Lewis: try the Mediterranean diet, uses Herb's like turmeric, ginger and Asian ginseng and speak to a chiropractor, Blessed Be.
Hi
Shake up the cases? This is all a fun money making game for this arrogant woman!
A fun money making game? Do you have MS? Your comment is arrogant.
@ 1:16 did she admit to being high on pseudoephedrine?? Then key ingredient in Meth??
The dry mouth is strong. clear signs of over dosing aka abusing
Sinus medicine