• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Retroflexed Odontoid

Gingergrrl

Senior Member
Messages
16,171
Not at all. But acetylcholine is a mast cell stabilizer, so i wonder if that might be the pathway that connects acetylcholine autoimmunity to CCI via MCAS/connective tissue degradation.

Thanks and that is interesting. I'm wondering if it might be similar with other autoantibodies that are similar to AChR like the calcium channel autoantibodies?
 

bread.

Senior Member
Messages
499
@JenB

hi jen,

fellow severe me cfs sufferer, do you think stem cell therapy would be a viable option for cci in the future?
 

bread.

Senior Member
Messages
499
Maybe. There is no evidence to support it but I do now some people who are trying it.

hi jen, thank you so much for replying, could you point me towards some literature, links or if possible the people who are trying it?

could be my last hope for some improvement, I suffer from severe (idiopathic?) myelopathy and (idiopathic?) secondary mitochobdriopathy.

THANK YOU!
 
Messages
57
Location
Germany
Yes I'll attach the measurement that he gave me.

Hi @crypt0cu1t Is it measured at neutral? Not sure, but it seems like. Did he measured the other positions as well?

My CXA varies a lot depending on position (from 129.8 to 146.9), beeing worst in flexion. I measured by my own, so not sure, if it is done properly.

Btw.: From what I have read from you, you were improving the last year, am I right? Hoping it goes on like this!