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Autoimmune disease

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How did you find out you had an auntoimmune disease?

10 replies

DancingintheDark17 · 23/07/2022 08:14

Hi,
I feel after so much online research I have hit a brick wall, and feel speaking to others in a similar position would be the best move forwards. So any input (help/ advice/ personal opinions/experiences etc) you can give us greatly appreciated,

The focus of this posit is how do I go about getting tested for an autoimmune disease, or even get my GP to look into the possibility of an underlying condition. My main concern is my mums (57) health, however I see similarities in myself (31) and my son (5), and feel something needs to be done about it ASAP.

Please bare with me here as I explain why I feel this is necessary and I will try keep it as short as possible lol

This initially began with me looking into my own health problems, as I felt my GP wasn't taking me seriously about them. Although I have repeatedly expressed my problems over a number of years, he has never officially diagnosed me with any medical conditions, or even tried to work out the cause, instead his answer is to take more medication. My symptoms are minor to him, but living with them daily really started affected my mental health. My symptoms include eczema (sensitive skin with dry flare ups and rashes), chronic runny nose and sinus problems, chronic head aches, light sensitivity, bowel problems, joint pain, bruising, fatigue, number of allergies and intolerances, facial flushing, aswel as unexplained skin redness. I started to find a pattern and work out certain triggers for my symptoms. I do my best to avoid these, not always possible so do have flare ups from time to time.
My son has very similar symptoms to me, whe he has had some bowel difficulties resulting in piles at an early age, irregular movements constipation/diarrhoea, unexplained allergic reaction (full body, as Wel as localised contact reaction), exercised induce wheeze, breathing difficulty, muscle/joint pain mainly in his legs, several bouts of unexplained fatigue/fever etc, however similar to me our GP doesn't see them as severe enough to do any follow ups. I'm trying my best to work out his triggers etc myself but without medical help I'm finding it impossible.
Although I would love answers for myself, it is my mums health that really concerns me, and again there are many similarities, however hers appeared to be more severe, resulting in many complications now. She grew up with eczema, asthma, bowel problems (majority of her large colon was removed in her 20/ due to a prolapse), later in line she was diagnosed with osteoporosis, arthritis, stomachs ulcers, SIADH, GERD,, high blood pressure, water retention.. the list goes on. These have individually caused her to have a number of hospital stays over the years, some in high dependency. Several broken bones (surgery to repair with plates and screws twice) wastage, blood clot in her heart (required 2 surgeries and on warfarin, which they are unable to get her on a regular dose), low sodium resulted in hallucinations and nearing a coma etc. Basically one problem makes the other worst, her GP is useless and simply gives her more medication, which is no longer working. Her hospital consultants were amazing but they focused on one problem, and once it was fixed she was discharged, however continues to have complications. She is a shadow of her former self, however doesn't want to be a burden so won't look into it further. Because she's always had ill health she just accepts it, but I feel more needs to be done, as she isn't getting any better.
My main aim is getting her better, then looking into possibilities of it being passed on in the family. I couldn't live with mysef if I didn't do anything to prevent my son going through what my mum is.

OP posts:
BonnesVacances · 23/07/2022 08:35

Has your online research taken you to Mast Cell Activation Syndrome (MCAS)? If not, look it up. If it resonates try taking the maximum dose of antihistamines the pharmacist will allow and see if that makes any difference at all.

You can try hayfever tablets (my DD was able to take 2 a day, one in the morning and one in the evening 12 hrs apart) or Fexofenadine which is also now available OTC.

Mast cells release different mediators and histamine is only one of them, so antihistamines likely won't cure everything, but even just some improvement could signify a connection.

Also read up on high histamine foods and see if cutting them out improves things too.

Unfortunately doctors that recognise MCAS and/or its prevalence are rarer than hen's teeth and you need to go private for good effective treatment. Plenty of good advice out there though to even just improve things a little by yourself.

memyselfi · 23/07/2022 08:43

My C-Reactive Protein was through the roof but I assume you've had full bloods done.
There is such a wide range of autoimmune conditions I'm not sure my experience would be helpful to you but basically I thought I had a flu, then swollen painful joints culminating in hardly being able to walk. It was rheumatoid arthritis.

hagelslaagfiend · 23/07/2022 08:53

I went into what I now realise was a major flare of ankylosing spondylitis during the lockdowns. Diagnosis came after repeated episodes of uveitis. After that all my health issues made sense. I'm much better since diagnosis but stress sends me into flare.

DancingintheDark17 · 23/07/2022 09:33

@BonnesVacances were both on daily antihistamines, unsure how strong the dosage are on them but I take certezine and my mum takes fexofenadine , However I will Definetly have a look at that, willing to try anything that might work. Thank you

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DancingintheDark17 · 23/07/2022 09:36

@memyselfi we've both had many bloods done, however I'm unsure if it's been a full blood check, as usually the docs checking against 1 specific symptom. As far as I'm aware mines has only ever shown low folic acid so I've got tablets for that. I will check with my mum though.
I've found that out too, there's so many different kinds, I don't know where to start talking to the doctor about it.

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DancingintheDark17 · 23/07/2022 09:40

@hagelslaagfiend that's great to hear your doing well now.. my mum in particular as been diagnosed with a number of medical conditions, however they never actually seem to work out what causes it, so she just takes medication for it. I however, have worked out my triggers, and like you my hormonal changes like stress, period etc all cause flare ups. I just feel having a definite answers and treatment would be amazing, it's just how to get that, or even try.

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Muchtoomuchtodo · 23/07/2022 09:43

Mine came when my thyroid disorder was diagnosed and they tested for antibodies.

hope you get some answers soon

HelpMeGetThrough · 23/07/2022 09:58

I've had an overactive thyroid and that was diagnosed through a blood test, after going to the doctors with all the classic symptoms. Finally had to have it removed.

I was diagnosed with Rheumatoid Arthritis 4 years ago. I had bad joint pain for a while and kept being told it was inflamed tendons. I pushed for a blood test and it was found my Rheumatoid Factor was through the roof ( should have been max 15, it was 572). Now I'm on the wonderful journey that is living with that and all the drugs that come with it.

Zarzuela · 23/07/2022 10:00

I'd look into some whole system health.
This book https://www.goodreads.com/book/show/648407.BetterHealthhThroughNaturallHealing is brilliant.

Also the film (free on YouTube) Fat, Sick and Nearly Dead https://www.rebootwithjoe.com/joes-films/ shows how our bodies can get sick like this and can heal (you don't have to be fat for the same issues to happen).

DancingintheDark17 · 23/07/2022 12:25

Thank you all, im going to check what blood work my mum has been done already, then take from there..
@Zarzuela these look very interesting, will definitely have a look for myself. I always felt drugs/cream were a temporary fix, infact they usually triggered another symptom, so I'm happy to try anything to avoid them.

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