MCAS, Tarlov cysts, autoimmune diseases etc

[JimmyBrown]

Hi all

I’ve had Mcas for around 8 years now. Seen several of the well known Mcas drs over the years and never got to the bottom of what’s causing my Mcas. I was told by Dr Akin it will be an autoimmune or inflammatory disease not yet diagnosed. I get all the sjogrens symptoms for example but negative lip biopsy. I’m not hypermobile either but do have some autonomic issues.

Anyway the latest is I have multiple tarlov cysts on my spine which I believe are causing issues. Most drs don’t believe they cause symptoms. Like MCAS there are a handful of drs who believe they do. It’s interesting that an EDS study showed 40% of participants had Tarlov cysts and there are similar results in studies on chronic fatigue and fibromyalgia patients too...

One of only a handful of neurosurgeons who operate on these cysts talks about neuro inflammation and neuro immunology and believes there is an MCAS connection.

Has anyone out there come across tarlov cysts (perineural cysts)? Most of the time radiologists don’t even report them. I apparently had these cysts on a 2014 scan but had no idea until last year.

Thanks

[Jess-UKMasto Partner]

Hi Jimmy, This isn't a connection that I know about but I'll be interested to hear if others have a similar experience. If the connection is clear between EDS and Tarlov Cysts and we observe that there is an overlap between EDS and MCAS folks then that makes sense that you won't be alone in having both conditions. Thanks for joining and sharing your query!

[JimmyBrown in reply to Jess-UKMasto]

Thanks Jess. It’s also definitely worth checking if an eds or Mcas patient has unexplained pain and/or bowel and bladder problems that there is no cyst in the sacrum (or other part of the spine). Most drs won’t correlate the cyst with symptoms so it’s almost never even brought to the patients attention. Dr Afrin has told me he sees many Mcas patients with perineural cysts and it’s an inflammatory process.

[suzie44na]

Hi Jimmy, I have 4 Tarlov cysts, which cause pain and neurological problems. I do not think I have EDs , but I often think I have POTS syndrome. Suzie