I was misdiagnosed for years and recently the more accurate answer came through in the last few weeks. My one makes my asthma worse and I’m looking forward for a proper treatments to treat this. Thanks for the awareness and so happy the medication is better today. Grateful - God is wonderful 🙌🏽🙌🏽
@@lauracarrillo884 What makes you really think it’s super rare? Because it’s super under diagnosed, or all together not diagnosed? Nobody wants to be diagnosed with anything on this video, yet all watching are praying and hoping for answers that all their Drs couldn’t give them. I guess I’m a “super rare”.
I spent 17 days in Ohio State University Hospital and my CNS Vasculitis was not diagnosed until the last test a BRAIN BIOPSY 3 months latter! Now let me have a answer on this if A person has anything that resembles Vasculitis what no go with the BRAIN BIOPSY instead of the last option which may allow progression of damage the patient and pain and suffering? I had a brain biopsy scared hell yes buy said they put ya out so ya don't feel it. Needle insertion out like a light in ER Recovery room my surgeon came into recovery I sat up on the bed stood up said I feel good no dizziness good balance and confidence. He looked stunned and said I didn't do anything! I said perhaps to puntuctured a brainfart! He bent over laughing! Pain scale of a BRAIN BIOPSY 1-10 10 being a novacaine shot in the roof the mouth I say BRAIN BIOPSY is a 2 level. A bit sore for couple weeks like someone pulling your a bit.
I was misdiagnosed for years and recently the more accurate answer came through in the last few weeks. My one makes my asthma worse and I’m looking forward for a proper treatments to treat this. Thanks for the awareness and so happy the medication is better today. Grateful - God is wonderful 🙌🏽🙌🏽
May I ask which one? My asthma has gotten worse and they’re thinking EGPA right now but trying to figure it out.
Diagnosed by my ophthalmologist (medical eye doctor) after I complained of red eyes not relieved with a
I was finally diagnosed with primary central nervous system vasculitis after three brain operations three spinal taps, and various tests.
Kevitivity What were the various tests?
Super rare
3 year ago my mom was diagoned with cns vaculitis too. how are you doing?
@@dipeshkeshari6520 how’s your mom doing?
@@lauracarrillo884 What makes you really think it’s super rare? Because it’s super under diagnosed, or all together not diagnosed? Nobody wants to be diagnosed with anything on this video, yet all watching are praying and hoping for answers that all their Drs couldn’t give them. I guess I’m a “super rare”.
I spent 17 days in Ohio State University Hospital and my CNS Vasculitis was not diagnosed until the last test a BRAIN BIOPSY 3 months latter! Now let me have a answer on this if A person has anything that resembles Vasculitis what no go with the BRAIN BIOPSY instead of the last option which may allow progression of damage the patient and pain and suffering? I had a brain biopsy scared hell yes buy said they put ya out so ya don't feel it. Needle insertion out like a light in ER Recovery room my surgeon came into recovery I sat up on the bed stood up said I feel good no dizziness good balance and confidence. He looked stunned and said I didn't do anything! I said perhaps to puntuctured a brainfart! He bent over laughing! Pain scale of a BRAIN BIOPSY 1-10 10 being a novacaine shot in the roof the mouth I say BRAIN BIOPSY is a 2 level. A bit sore for couple weeks like someone pulling your a bit.
Excellent presentation. Could have posed the questions on the slide as well.
Superb 🎉
Scary disease! 😱Good thing there's Cleveland Clinic rocket surgeons working on it. 😆
Really an excellent presentation
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