What are rare neuro-immune disorders?

Рет қаралды 9,177

SRNA

6 жыл бұрын

Brenda Banwell, MD | Children’s Hospital of Philadelphia
October 20, 2017

Пікірлер: 10

@Julie4music 3 жыл бұрын

Very interesting

@jilligain3409 3 жыл бұрын

I had a meningioma tumor on T-7 that wasn’t found till I was paralyzed. I also have Paget’s disease of the bone since my teens. Bilateral hip replacements. I need a shoulder replacement but haven’t done it yet. And a history of rocky mtn spotted fever from when I was 23 & constantly going on hiking & biking weekend trips around my area in South Carolina. I’m now 48. And I live w/ chronic pain fatigue & fibromyalgia that didn’t respond to usual antidepressant & neurontin/lyrica therapy. My life is over & I’m suffering terribly. No one really helps me here as my Dr’s back in the day said I was crazy & needed psychiatric help. Because no one looked for a spinal tumor that was slowly paralyzing me. And also because RMSF supposedly didn’t even exist in South Carolina. One dr even got in my face & told me I needed to get a husband & get on w/ my life. I got the standard “young lady” treatment. I don’t know what to do or who to even ask for help

@barbaraletterly4884 3 жыл бұрын

Jilligain, I am so sorry for all you have been through and for all the ways the medical community has failed you. It’s hard to understand suffering and it sounds like you have been through a lot of it. I think there are no simple “answers” physically, emotionally, or spiritually. I only came across this video and your comment because of some symptoms I’m experiencing that I’m trying to self-diagnose because doctors say my lab results are normal but I’m still having various symptoms too long to go into here. My sister also has suffered much with her health and has been sick for the majority of her life. I say all of this to say....for what it’s worth I am praying for you. I have no other answers than that....just prayer...that God would bring you comfort, peace, healing, His goodness and His kindness, and above all....hope. ....Plus doctors that aren’t idiots. Lol

@BeanDar 3 жыл бұрын

If I would have read this a year ago I would not have believed you. But now I've gone for the loops over the healthcare system myself for a neurological condition that is largely unknown. I'm so sorry that you had to go through all this, and it seems as though it's almost too late to do much about it for you now. You posting this comment, as dark as it sounds, lights of fire and me to enjoy what I have while I have it, because this life is fleeting anyways and for us it is shorter I suppose. I hope you can enjoy your time here on Earth as much as you can, and I would be delighted to text or have a conversation with you. If you want my email just let me know or phone number even haha. Ben, from Houston Texas, much love.

@littlelulu4107 2 жыл бұрын

See a good naturopath and you will get back to living and not just surviving.

@noctowlgaming4293 2 жыл бұрын

@@littlelulu4107 Bruh

@littlelulu4107 2 жыл бұрын

@@noctowlgaming4293 troll

@yvonnemccullaghward361 2 ай бұрын

Just seeing this. I took ill with diagnosis of TM idiopathic whilst in Europe though had lived in upstate NY . My Lyme disease test was negative. I am also wondering if I was tested with right kit.

@wearesrna Ай бұрын

Hello, we are so sorry to hear about your diagnosis. If you have any questions, please feel free to email us at info@wearesrna.org.