FND and MCAS

[VR053]

Hey guys it's been a while since I've written on here but recently I've been dealing with bladder issues and I thought I might have IC/ interstitial cystitis and I've been strictly on a diet to help but other people have been telling me I should look into MCAS especially since I have POTS. I have thought about it before but now I'm confused. Anyways, I also think I have FND like I'm pretty sure because I've dealt with tics, pseudo seizures, paralysis, and many other symptoms that comes with FND but recently I've read on how MCAS can cause some of these symptoms like pseudo seizures and fainting and the bladder issues. By the way I do have a lot of symptoms of MCAS like flushing and rashes and bladder problems. If anybody can help me with any of these conditions that would be great. I mainly know everything about POTS but it's the other conditions I'm not sure about. If there's any symptoms that stand out from others, them please tell me and I will tell you if I have it and we can go from there. I know this is probably confusing but thank you so much for your help.

[210272]

Hi VR053,

I do know about POTS and other forms of orthostatic intolerance (eg dysautonomia) but don't know much about MCAS although I remember that the CEO of one of the FND charities once told me that she thought some people currently diagnosed with FND could benefit from investigations into MCAS. I'd read about it in an Editor's Choice piece about so called 'medically unexplained symptoms' (another term for FND, according to some) by Dr Emma Reinhold and just looked her up again. I'm not on twitter but I was able to read some of her posts which you might find useful/interesting: Emma Reinhold #BLM (@DrEReinhold) / Twitter

[VR053 in reply to 210272]

Alright, well thank you for helping me with what you can I really appreciate it. That's very interesting, so can you be misdiagnosed with FND but actually have MCAS? Or do they come with eachother? Thank you so much!

[210272 in reply to VR053]

It's hard to tell but I think a lot of people with rare or not well recognised conditions can be misdiagnosed with a psychiatric disorder (eg FND) and then find it hard to get adequate testing for anything else such as MCAS or EDS. If you have time to follow Dr Reinhold's tweets you may learn more from her than you can from me. I think delayed diagnoses are more common for women since our symptoms (whatever they may be or derive from) are not given credence or validation and this, in turn, can cause mental health problems. There was a good article about EDS which covered this recently so if you are on Facebook and look up Lara Bloom you may be able to find it (apologies, I can't remember where it was published or who wrote it but I know Ms Bloom contributed to it).

Meanwhile you are very welcome and you might be interested in a cool fb group called The Sick Chicks if you haven't found them already