help please

[Kirsty1237]

I have hEDS . I had my kidney removed 12 weeks ago as I had vascular issues with my renal vein . Since then I have zero appetite . Flushed chest , big brain symptoms almost unbearable memory issues disoriented feelings , I eat very little bit seem to feel worse for it , burning sensations in body , and so much more. I am existing not living and have looked into mcas and I think I could be in a huge flare up ( I don’t get a minute off ) I am

Now sensitive to warm hot water ( I loved a bath before ) and products all sting and smells ate intense and I can’t deal with them

I have lost nearly two stone and my surgical team are labelling me mentally unstable or depressed

I feel like I won’t live long in this state

I also have three metal clips inside me .

i have spent weeks looking at posts on the internet and see that it’s not easy to see somebody who could diagnose you but I’m posting in case anyone can help me

I am willing to pay but I need to see somebody who would take on a complex case.

ive had gastro tests so far ok but my body is reacting to everything I put in my body

Thank you 🙏

[suzie44na]

Hi Kirsty1237, sorry to hear of your problems. If I was you I would try to find a consultant who specialises in your symptoms and ask your doctor to refer you to them. If you are in the UK it will probably be someone in London, as I think they look into more rare cases. Hope you find help and answers soon. Wishing you all the best,

Suzie

[JayCeon]

Hi Kirsty, if you haven't that much of a clue yet whether it's really this and nothing else, and what more information, I'd do one of the checklists / questionnaires, like Molderings' one in this doc here: originalText (2nd link is the English version).

What you've describe to me sounds like it could be several things, but also possibly MCAS.

I see you'd written some posts on Thyroid UK 4 years ago - what's become of that route?

[janeps]

Hi Kirsty,

Yor symptoms would seem to be classic MCAS and suggestive of someone who is in a Mast Cell crisis. My daughter had exactly the same experience. Mast Cell Action is a site that has been set up to address the lack of support for Mast Cell patients. They have a list of private consultants who they can recommend. Most do telephone consultations so you won't have to travel. There is a lot of good information on there too. Also, the website SIGHI which you can access via Mast Cell Action. It is the Swiss Interest Group Histamine Intolerance. After much research SIGHI is the best place for accurate information. They have a list of low histamine foods that should be safe for you to eat. I can also recommend taking the enzyme Diamine Oxidase, Daosin before meals. It helps to break down Histamine in foods. You also need to take an antihistamine. If you're very reactive I would suggest you start off with a small dose and build up slowly.

Best wishes,

Jane

[Kirsty1237 in reply to janeps]

Thanks Jane Did your daughter have zero appetite ? My brain just isn’t even connected to food it wants nothing

Did your daughter improve ? X

[janeps in reply to Kirsty1237]

Yes, her appetite slowly improved. She is still on a low histamine diet and takes the Daosin before meals. She lost a lot of weight before we realised it was a mast cell problem and she was reacting to so many foods. Her diet is still restricted but she can definitely eat a wider variety of foods than she did initially. Xxx

[TTBluebells]

Hey Kirsty, hopefully you’ve seen someone knowledgeable at this point, if not try to get a private appointment with Professor Q Aziz and ask to be put on the cancellation list. He is one of the EDS-MCAS specialists in London but does virtual consultations and is also looped into a wider network of experts incase you need input from someone other than a gastroenterologist. Best of luck x

[Kirsty1237 in reply to TTBluebells]

I have an appt with him via zoom 29/9 I’ve been waiting ages . I feel like he’s going to think I am mentally unwell as my symptoms are so severe day and night . I react to meds .. am now termed annorexic despite wanting to want food and eat and my brain is totally affected

The flushing red marks and other bits I could live with but the depersonalised feeling 24/7 I don’t know if that could be reversed ever as it’s been three months x

[TTBluebells in reply to Kirsty1237]

I know it’s pretty impossible but try not to worry, he’s used to seeing very severe cases and med interactions are quite common, once we were able to pinpoint which meds and fillers I was allergic to I’ve been able to tolerate them much better so please don’t give up hope there are loads of alternative meds!

Before I was medicated I was pretty much in exactly the same position as you but had been dealing with severe symptoms for a very long time with confirmed mental health diagnoses too and of course stress and anxiety are massive MCAS and gastro related disease triggers so although he might mention mental health stuff it won’t mean that he thinks it’s all in your head as he is really test led so will most likely order loads of tests for you before coming to any conclusions. He did not hold any of my mental health stuff against me or think I was crazy.

If you’ve kept a symptom/ food / trigger diary it will be handy to have that to hand as well as the form you fill in before the appointment as in my experience he went through all the questions again so if brain fog is an issue keep this accessible during your appointment. I hope you have a good experience with him and stay hopeful if he can’t help he will know someone who can x

[Kirsty1237]

Thank you I’ve tried to do the 100 words and it’s possible . I hope w can help me even a bit as I don’t really get to minute of me I feel totally depersonalised xx

Thanks I will let you know