mumsynana6: Hi all, I am writing this in the hope that... - NRAS

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mumsynana6

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Hi all, I am writing this in the hope that some of you lovely people out there will be able to help me help my son. He is now 32 and has suffered with varying degree/episodes of eczema all his life. For the last 3/4 years now he has developed Intolerances to certain foods -some quite severe although as I understand it not severe enough to be classed as an allergy. Even so the last few years have been miserable for him as he repeatedly has a heavy head feeling, blocked nose and ears, making him really giddy all the time and affecting his balance and making him nauseous. He has a "bad smell" in his nose too at times he tells me. He often feels tired with low energy and rarely feels " well ". Our family doctor has tried to help and prescribed SERC for the giddiness and over the years we have discovered between us some of the culprits - the usual, wheat, gluten and dairy- but we do feel very much on our own with this. { Our GP has advised against going to a private clinic as often they are not all they seem. } I would be grateful for any feedback/ advice from those of you suffering similar and if you are, our sympathies !!

Thank You. Take Care

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mumsynana6
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8 Replies

Hi - you might be onto something connecting eczema with autoimmunity and RA. I had severe eczema from the earliest years right up until I was 45 and my menopause started.

At the age of 52 I now have RA but it's not a very aggressive type although I do also have a broad spread of connective tissue symptoms under this umbrella. Looking back I think the eczema, allergies, my hypothyroidism and hormonal changes are all closely linked or part of the same thing for me. I now have problems with nose bleeds and sores, dry eyes (used to have bad rhinitis) and dizziness as well as jaw and throat problems and peripheral neuropathy. The connective tissue diseases often overlap and mine seem to have come and gone like buses and shape shifted with hormonal changes.

I sometimes wonder if I could have sought more holistic expertise about vitamin and mineral imbalances, intolerances and hormonal changes when I was younger I might have avoided getting RA now - but this isn't a very useful way train of thought so I don't dwell - and I am at least eczema free now which is great!

However my oldest son of 23 has Aspergers and severe eczema and a lousy diet so I do relate to your concerns and would encourage your son to see someone really forward thinking about his eczema now while he is still relatively young. An immunologist for example or a multi disciplinary team at a place like Addenbrookes - not sure but there must be some research centres who would be interested in running trials and exploring the links with eczema and autoimmunity. I did ask the eczema society about this but they weren't very helpful at all. My son is trying to get his food issues addressed through CBT or hypnotism with our support so we are a long way behind you but glad he is trying and hope his eczema is helped by improving his diet.

Good luck with your endeavours on your son's behalf.

in reply to

PS I should add that 12 days ago I started Azathioprine having tried and failed to tolerate three other DMARDs over four years. This DMARD was suggested to me by a connective tissue professor last year if I couldn't tolerate MTX. He said it may not be enough for my joints but might really help with my other connective tissue problems especially my allergic skin problems. I'm only on a low dose still but so far I've had no adverse side effects at all and my first weekly blood monitoring was fine.

I tell you this because many of the Immunesuppressants are multi purpose and if your son's eczema and other problems are autoimmune this might be something for him to discuss with his specialist/ dermatologist. I believe some people are prescribed Azathioprine or MTX for severe eczema. Sulfasalazine and Hydroxichloraquine were both disastrous for my skin so a really good immunology focussed dermatologist is probably the specialist to seek out.

Coastwalker profile image
Coastwalker

Have you ruled out both Low thyroid (Hypothyroidism and B12 as both have similar symptoms and can go hand in hand.

Only problem is with both blood tests for B12 and Hypothyroidism is a Doctor will say your bloods are fine so you must be OK, this often is not the case and Doctors are not hot on diagnosing B12 and Hypothyroidism. Pop up your story on both the 'Thyroid Uk' and (Pernicious Anemia) site PAS on here 'Health Unlocked'

I can give you a recommended list of Thyroid/b12 bloods to ask for if needed mumsynana6

I always ask for a 'printout' of my bloods and their 'ranges' and for my family members too and then pop the results up on Thyroid Uk for other clever members to spot a problem, when Doctors cannot.

mumsynana6 profile image
mumsynana6 in reply to Coastwalker

Thanks Coastwalker - wow that's an area we hadn't considered ! I will have to do some research on that for my son- as you say sometimes Doctors need a bit of help to help us don't they ! thanks again mumsynana

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Coastwalker in reply to mumsynana6

Do remember to get a blood printout and ranges, most important.

Your Son might also be low in iron/ferritin.

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mumsynana6 in reply to Coastwalker

We will - thanks again Coastwalker mumsynana6

Livingston profile image
Livingston

Has he ever been seen at an ENT clinic? The bad smell might be infected sinuses & it sounds like he generally has a lot going on in that sort of area. Also, has Meniere's disease been excluded as a cause of the giddiness/nausea?

mumsynana6 profile image
mumsynana6

Thanks for your reply Livingston. Actually I said the same just this week to my son ! No he hasn't and that is our next step I think as we are getting nowhere ! Dr did treat him for Labrynthitis about four years ago now but Menieres hasn't been mentioned either. The focus seems to be on the food Intolerances which he obviously has but it makes sense to check out other relevant avenues doesn't it. Thanks again mumsynana

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