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Hi I'm new and posted in the intro subject yesterday
I'm a full time carer looking after my very wonderful mum.
She is diagnosed with:
EBV
Mast cell Disease and allergies (But not MCAS - she might have that specifically but the combo of to sick and to expensive meant we just wanted her on meds fast and her immunologist was fine with this given her allergy testing results.)
Coeliac and IBS
CF
She may have:
EDS (theres a family history)
Autonomic Dysfunction/PoTs/OI
We're in the UK, her GP is beyond crap and we're seeing the immunologist privately. She's not bedridden but can't go out often, do household tasks/cook or get dressed everyday. Loungewear is a godsend
She's on mast cell stabilizers, anti histamines, DAOsin, low histamine/FODMAP diet. Has emergency med protocol for anaphlaxis.
I would really like anyone's experiences or opinions on this...
When she was peri-menopausal she started getting joint problems, worsening digestion, GERD, developed more allergies, tired more easily etc but post menopause was when the fatigue hit her like a truck and the brain fog started. So I'm querying if there is a link. I've been reading as much as I can about immune systems and the menopause and would like to look into hrt to see if it would help.
My theory is she does have EDS and post menopause the loss of muscle tone/hormone changes did something that I'm not clever enough to understand and I've read research about how the immune system is impacted and....and...then I get a bit lost.
In an ideal world we go to her GP to discuss it but...as I've said they are crap and I'm still seething with rage after they refused to prescribe mast cell stabilizers and practically yelled at her down the phone. The last none specialist Dr we saw refused to follow mast cell protocol, ignored me intervening when my mum fell unconscious and she suffered anaphlaxis. So as you can imagine I want the next steps in her care to be not deadly. Did I mention she's my mum and I love her dearly and it hurts to watch her be treated like shite for no reason? Sorry off loading! Also i'm doing her ESA application again atm so I'm feeling all the feels.
Thank you for getting through reading this![Heart :heart: :heart:](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
(And if your reading Mum sorry about me writing on the internet about your menopause...!!)
I'm a full time carer looking after my very wonderful mum.
She is diagnosed with:
EBV
Mast cell Disease and allergies (But not MCAS - she might have that specifically but the combo of to sick and to expensive meant we just wanted her on meds fast and her immunologist was fine with this given her allergy testing results.)
Coeliac and IBS
CF
She may have:
EDS (theres a family history)
Autonomic Dysfunction/PoTs/OI
We're in the UK, her GP is beyond crap and we're seeing the immunologist privately. She's not bedridden but can't go out often, do household tasks/cook or get dressed everyday. Loungewear is a godsend
She's on mast cell stabilizers, anti histamines, DAOsin, low histamine/FODMAP diet. Has emergency med protocol for anaphlaxis.
I would really like anyone's experiences or opinions on this...
When she was peri-menopausal she started getting joint problems, worsening digestion, GERD, developed more allergies, tired more easily etc but post menopause was when the fatigue hit her like a truck and the brain fog started. So I'm querying if there is a link. I've been reading as much as I can about immune systems and the menopause and would like to look into hrt to see if it would help.
My theory is she does have EDS and post menopause the loss of muscle tone/hormone changes did something that I'm not clever enough to understand and I've read research about how the immune system is impacted and....and...then I get a bit lost.
In an ideal world we go to her GP to discuss it but...as I've said they are crap and I'm still seething with rage after they refused to prescribe mast cell stabilizers and practically yelled at her down the phone. The last none specialist Dr we saw refused to follow mast cell protocol, ignored me intervening when my mum fell unconscious and she suffered anaphlaxis. So as you can imagine I want the next steps in her care to be not deadly. Did I mention she's my mum and I love her dearly and it hurts to watch her be treated like shite for no reason? Sorry off loading! Also i'm doing her ESA application again atm so I'm feeling all the feels.
Thank you for getting through reading this
(And if your reading Mum sorry about me writing on the internet about your menopause...!!)