2018 RNDS - Understanding Transverse Myelitis

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SRNA

Күн бұрын

2018 Rare Neuro-Immune Disorder Symposium
October 27, 2018
Leslie Benson, MD | Boston Children’s Hospital

Пікірлер: 22

@esthermiller2713 4 жыл бұрын

As a 72 year old female when diagnosed mid-January ‘19, the numbness in 2/3 of my body, (from just below the breasts on down to & including the toes) has continued to progressively worsen every day. I initially suffered constant pain in my lower back for two or three weeks (while an admitted patient), but that pain left completely & hasn’t returned in these almost eight months since. This disorder destroyed my sense of balance, but after daily physical therapy for a month my balance greatly improved. I do rely on my walker for safe stability when I have to leave our apartment, but in the apartment I just reach out frequently to steady myself on furniture or a wall when walking. My muscles have not yet been affected. I’m very grateful to still be able to walk,.......although because the numbness is a little righter every day (causing my skin to feel like extremely tight rubber which feels a bit thicker each day), walking is a little more awkward & difficult each day. Also, very short periods of activity doing minor household chores exhausts me to the point of having to lay down for a rest lasting at least an hour. I believe that I’m on the path to eventual paraplegia. BUT,......I’ve been MOST concerned about one particular result of this disease which no one ever mentions in these videos discussing this disorder.....which I experienced!! I believe the transverse myelitis disorder which struck me down almost eight months ago caused my brain to malfunction! My first episode of amnesia (referring to about half an hour of consciousness & talking nonsense).....& still to this day not remembering that period of time.....happened less than half a minute after my collapse. Then, moments after I became aware again, the aphasia happened. I still don’t know how long the aphasia lasted. I know I was talking again inside the next twenty-four hours......in the emergency section of our hospital. The following morning I was transferred to a larger hospital in a city one hour away. I experienced temporary amnesia once in the second hospital, & also another occurrence of permanent amnesia. Since I’m hearing no mention of the brain being affected like this in other TM patients, nor in explanations of the disease from doctors, I’m wondering if my experience is very unique. I will soon be seeing a neurologist & am very anxious to find out if my two MRI’s of my brain, or my lumbar puncture, shows why my brain was affected. I want to know what caused the brain dysfunction. I want to be reassured that there will be no reoccurrences! They frightened me!

@SongOfSongsOneTwelve 2 жыл бұрын

Transverse myelitis can sometimes be attributed to stroke.

@havanadaurcy1321 2 жыл бұрын

Is it deadly (here after Slipknot's ex drummer died who suffered from it)

@DisabilityExams 5 жыл бұрын

What is ADEM - best to spell out all medical abbreviations instead of assuming the audience knows them, since there are thousands, and often the same abbreviation has different meanings depending on specialty.

@michswags 5 жыл бұрын

I SUPER appreciate this very good video..Thanks for you time!!!

@lourice.ishi1 3 жыл бұрын

Thank you for this presentation. 😊 👏👏👏 Very easy to understand.

@farade726 3 жыл бұрын

amazingly helpful.

@jfrankki 3 жыл бұрын

I was diagnosed 3 months ago and am struggling with nerve pain..

@EditorXxX 5 жыл бұрын

I was diagnosed with TM in 2010 and became quadriplegic I was 13 yr old at that time I am now 22 yrs old. It's been a really long journey for me I'm still hoping that we can find a cure for this disorder.

@kellymertinooke271 5 жыл бұрын

I was diagnosed 2017, however I believe I had it for a while and it caused my spinal stroke 4 and a half years ago. It's a painful disease and I hate it. If any one has any ideas on how to control the pain I'd love to know more about it. Thank you.

@Mrrobertotopluto 4 жыл бұрын

Get yourself some edibles if you’re against smoking weed. I have TM myself.

@meaghanwatson2136 4 жыл бұрын

I was also quite young and I’m now around the same age, diagnosed at 8 years old and I’m now 20. It’s a long recovery I hope you are doing well.

@zglpy 3 жыл бұрын

I was diagnosed by 1999 at my 16yrs. Now I am 37, yeah, I have been living with this disability for more than 20yrs. Hope someday I will be recovered by new medical technology

@josephsmitty-jo1oi Жыл бұрын

@@zglpy lisa, my brother just got it, any advice or anything ?..please !