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Desperate for some help, at the end of my patience and feel I have no help

(15 Posts)
ec1993 Thu 05-Dec-19 21:17:07

Hello everyone

When I was 18 I had a random swelling on my lip, followed by my arm and then my foot. This happened a few times, dr diagnosed me with urticaria and gave me antihistamines.

I then had nothing for 6 years, nothing at all.

The last 2 years have been unbearable, I swell up everywhere and anywhere, I feel so poorly all of the time on top of this have recurrent miscarriages.

I am convinced I have an autoimmune disease of some kind but all they keep doing is putting my antihistamine dose up and prednisolone to take when I swell.

I don't know how to carry on like this I'm finding it so hard to cope. Please if anybody has experimented similar let me know because I feel so alone with this.

Consultant

ec1993 Thu 05-Dec-19 21:19:18

Sorry meant to put experienced anything similar and didn't mean to our consultant at the end.

MidnightMystery Thu 05-Dec-19 21:24:45

Hi I didn't want to read and run! That looks so sore and painful! My first thought was allergic reaction, which could well be auto immune related.

Have you had any allergy tests done at all?

ec1993 Thu 05-Dec-19 21:45:54

@MidnightMystery this all started about a month after I had a course of co-amoxiclav antibiotics. Initially they thought it was a reaction, now they don't think it's linked. I've had so many tests, lupus, all of the usual allergy tests etc and no answers. My ANA test always comes back positive. I've had multiple miscarriages. It all just seems to tie up in my opinion but every time I see somebody for it they just tell me I've got acute angiodema and change my antihistamine dose. I'm so so fed up and feel so alone. I have to leave work if I start to swelll, I'm anxious to go out in public in case my eye or lips swell. It's affecting my whole life and I just feel so fobbed off by the NHS consultants 😢

Ariela Thu 05-Dec-19 21:50:54

Is it diet related? Had a friend was citrus fruit, kiwi fruit and a couple of other things, used to make her lips swell and gave her hives

99RedBalloonsFloating Thu 05-Dec-19 21:58:54

Hi if you are open to seeing someone decent who practices Traditional Chinese medicine - someone who is experienced in accupuncture, moxibustion, and prescribing Chinese herbs - it could help. TCM can be good for finding an approach to seemingly un-linked symptoms (they won't necessarily be un-linked from a TCM perspective). And it's also sometimes good for autoimmune type conditions and chronic conditions. I have had really good results with TCM for basically anything that mainstream meds hasn't touched - very severe hayfever and endometriosis for example.

ec1993 Thu 05-Dec-19 22:59:39

@ariela it's not allergy, I've been tested for all kinds of foods, wheat, gluten etc. I even kept a food diary for 6 months and no pattern ☹️ xz

ec1993 Thu 05-Dec-19 23:00:45

@99redballoonsfloating thank you for this information. I will look into it, I also have endometriosis xx

endofthelinefinally Thu 05-Dec-19 23:14:42

Google C 1 esterase inhibitor deficiency.

endofthelinefinally Thu 05-Dec-19 23:18:46

www.ncbi.nlm.nih.gov/pmc/articles/PMC3666183/

I found this pub-med link that might be helpful. Of course I could be wrong, but it seems possible.

Cocolapew Thu 05-Dec-19 23:25:52

I get the same type of swelling and have so since I was very young, I have Lupus.
I've never tested positive for it, I was diagnosed on symptons.

endofthelinefinally Thu 05-Dec-19 23:34:00

contact.org.uk/advice-and-support/medical-information/conditions/c/c1-esterase-inhibitor-deficiency/?f=C

This is a simpler article.
The appropriate person to see would be an immunologist.

endofthelinefinally Tue 17-Dec-19 06:59:03

How are you OP?
Did you get any further with a referral?

ec1993 Tue 17-Dec-19 09:21:47

@endofthelinefinally thank you so much for the information.

They are still maintaining that I have chronic urticaria and angiodema.

I had a recent MTHFR test come back positive.

I don't know what to think really, I'm waiting for my letter to come for referral to the fertility clinic so maybe I'll get some answers then as I am sure this is all related to why I've lost so many.

Thank you to all of you who replied ❤️

Flossie44 Wed 15-Jan-20 11:08:56

Have you had your mast cells tested?? Have a look at mast cell activation syndrome. Especially google Natasha Coates. A young girl with the condition who explains what it’s like and what she lives with.

Take care. I hope they get to the bottom of it for you. Must be so debilitating

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