I don’t believe it

[Buckley123]

I don’t believe it 😂😂😂🙇‍♀️

[Lupiknits]

It’s the Twilight Zone.

Darn it, I hope somebody, somewhere, gets you the help you need xx

[Buckley123 in reply to Lupiknits]

It is isn’t it what did I expect 🥴😌😂 lived my life in the twilight zone 😂😂❤️

[Jmiller623]

I saw this too! Seems white blood cells release a lot of ACE so it can be high in inflammatory diseases.

I also read an article about diagnosing neurosarcoidosis. After reviewing supplementary material, I saw most with neurosarcoidosis had negative LP - about 85% and a good majority were listed as probable instead of definite diagnosis due to lack of biopsy. Seems like your predicament is common in those with elevated ACE and no clear diagnostic picture. About 20% looked like they got away with just steroids and the rest were placed on various immunosuppressants - MTX and azathioprine being the most common.

academic.oup.com/qjmed/arti...

[Buckley123 in reply to Jmiller623]

Thanks jmiller xx

And this is what my neuro sarcoidosis specialist is planning to do azathioprine

Jades syndrome it is 🥴 xxx

[CecilyParsley]

Omg I am so very sorry. I hope that you will get effective and timely treatment. It must be completely overwhelming for you 😞xx

[Buckley123 in reply to CecilyParsley]

Don’t worry this isn’t a list of what I have just I have high ace levels and these are what can cause it dx

[CecilyParsley in reply to Buckley123]

Oh phew!! I hope you get a definitive diagnosis and treatment xx

[Buckley123 in reply to CecilyParsley]

Thanks Hun how are you xx

[CecilyParsley in reply to Buckley123]

I have nothing to complain of compared to you but I am wretched at the moment. I cannot seem to pick myself up. I am severely fatigued to the point of any exertion making me white as a sheet, trembling and giddy. Lots of gastric problems, itchy rashes, joint and muscle pain, mouth and genital sores. I have another UTI so tenth lot of antibiotics and a stinking head cold for three weeks now. Miserable but thankful that I do not have the serious worries that lots of people here have. Thank you so much for asking when you are going through so much xx

[Buckley123 in reply to CecilyParsley]

Don’t be silly that sounds awful I’m on steroids atm so not feeling to bad very shakey though !!

I hope you feel better soon xxx

[CecilyParsley in reply to Buckley123]

Thank you, you too xx

[Buckley123]

Don’t worry this isn’t a list of what I have just I have high ace levels and these are what can cause it dxx