Really need some help!!

Posted , 5 users are following.

Hey everyone! Looking for advice on what I think after a very long road is an autoimmune disease.

Just over 2 years ago I stopped smoking and the day after my body basically just fell apart! I have had constant infections, (form UTI to inner ear) constant border line low iron and b12 results very high anxiety (which the the doctors just love as means they brush my "imaginary" conditions under the carpet!!) and every weird and wonderful symptom going. Some of the most worrying ones being chest pain/GERD type problems a constant sore neck and head one side, dizziness, mostly outside and small twitching/creeping sensations on the left side of my face! I have had lots of blood tests (not until now for autoimmune!) thurra eye/head examinations with the only thing showing so far is slightly raised inflammatory markers. I think my Dr is very much stuck in a generalised age bracket thing where even when she agreed to test me me for autoimmune she said she still thought I was 20 years too young (I'm 36) for anything like that to be going on!

I had originally thought I was intolerant to Gluten, which obviously may still be part in parcel/connected to what ever else is going on but so far not I have not had much change on anything, especially the neuro side of things!!

I have a red rash across one face, which flares and although is always there to some extent can become tingly and very slightly raised, I am constantly tired and my eyes feel like sandpaper 1st thing in the morning I also have am very sensitive to patterns/bright colours, this is most apparent at the school gate when after walking down a very quiet country road to all of a sudden standing in a crowd of 200 odd people all in different colours really flares it up and causes me really bad social anxiety and you can imagine what kind of field day the Docs have when I try to explain that!!

I could really use some advice as this seems a really complicated illness and although I would really like a diagnosis and just to finally to get on with my life rather than worrying what was wrong with me, I could really do with some support!!

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6 Replies

  • Posted

    I'm no expert by any means but, you do appear to tick a few Lupus boxes

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  • Posted

    The symptoms you have with GERD, UTI, low b12 an be corrected with diet and exercise. Other than that, slightly raised inflammatory markers, twiching on face, will also be fixed on its own. Congratulations on stopping amoking. 
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  • Posted

    and for the dry eyes (I too have this)  get your GP to prescribe Celluvisc drops, they are really good
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  • Posted

    Thanks, hoping when I get the blood tests on Monday that the results are as conclusive as they can get or at least point me in the right direction as I have spent far too long worrying about what is wrong with me!

    Does anyone get gland pain under arms and in groin area with no raised or swollen glands? This is quite commen for me, I also get rib and breast pain!

    I always feel when I go into the docs that they never take me seriously as always listing 5 plus random symptoms, one Dr has actually smirked at me before and asked if I had anything that didn't hurt!!!

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  • Posted

    I had a neurologist tell me once that just because it's not on paper, doesn't mean it doesn't exist. So if the results don't come back as anything, don't let them just shrug you off.

    I've had a lot of the same symptoms (minus the rash) for 2 years and I asked to be referred to a rheumatologist even though my bloodwork was okay and he dx me with fibromyalgia. I finally feel not crazy!

    So hang in there and don't give up! xx

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Thanks for your help!

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