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Trinitybella? Ophelia?


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Hey sorry I've been so exhausted and I was busy doing tests. They found neuroinflammation and got subacute AE diagnosis based on that, labs, and symptoms. Dr chong is wonderful, can't say enough good about him or najjar or the staff. Dr chong suspected some autoimmune disease based on my symptoms and something he saw on my: arms, fingernails, and hands; this was confirmed with PET scan - many areas of decreased metabolism in brain - inflammation on MRI. Doing lots of labs to figure out what autoimmune disease I have - they said I am one of the most fatigued they've seen.

 

Starting treatment when get back right away. Thourough consultation with dr c and then consulted with dr n for a long time. Dr n came in excited as if he'd discovered or figured something out! Their confidence is hopeful.

 

Office was nice and efficient. They worked hard to get tests covered by my florida insurance and they are working hard to get ivig covered.

 

I'm just really sick from trip and ready to go home. Had bad reaction to PET injection and had to stay in hospital.

 

I'm very happy dr c is my doctor. He does answer emails straight away. They found much in my labs that was overlooked.

 

I made amends with my cousins in nyc - now they see and have proof that I am very sick. So right now I have encephalitis and they said I have autoimmunity but they haven't identified the cause or what it is. Ready to go home to my bed and start treatment.

 

Thanks for your concern!!!! Appreciate it guys. I highly recommend dr chong for mystery completely debilitating condition. They listened to me intently and nobody else has. Ttyl.

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Sorry I did not post right away because I saw that Ophelia was having such a tough time with his appointment with Dr Najjar. Didn't want him to feel worse that I went and things were moving along.,,,anyway, it was a wonderful appointment. It was the first time I didn't feel like I was pleading for someone to believe her bizarre symptoms! He told us too that based on symptoms he feels its inflammation in the brain. He spoke directly to my 14 year old to make her feel apart of the whole process, but he wasn't aware that her mind drifts and she understands very little. He's admitting her into hospital Dec. 17th for SPECT scan and more EEGS and tons of blood work. He is not convinced that there are NO seizures. He also said that the reason she's probably getting a little better is the minocycline she's on which helps brain inflammation. Not sure about that, since I had her on minocycline exclusively at one point and it didn't do much until I added the bactrim. I then tried bactrim alone without minocycline, and it did nothing without the minocycline. I'm excited to see what he comes up with. He's super nice! Thanks for asking!

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They are trying to get ivig approved and want to do that as soon as possible. My cytokine levels were very very high.

 

Dr. C is trying to figure out the autoimmune disease that he suspects - would explain my fatigue and PET scan showed some sort of autoimmunity effecting brain. So if he figures it out, my treatment may be tailored. Did labs while here and will do more labs at home to find autoimmune disease.

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So glad to hear of both of your successes!! It is so much easier to go through treatment (even during the most difficult parts) when you have trustworthy doctors to help you through every step of the way! This is HUGE!!

 

Ophelia--when I heard of your trip and changes, the first thing that came to mind was that "things happen for a reason" and what our medical office believes that "coincidences also happen for a reason." They may be on to something!

 

Best healing wishes and heartfelt good healing thoughts are coming your way!!!!

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