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LUPUS UK
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I'm on the long road of diagnosis

I have many symptoms most of which are going unheard by doctors. Including joint pain pericarditis Costochondritis rashes brain fog difficulty swallowing noise sensitivity and loss of cognitive function. I would be forever grateful to receive any advice support or kindness from people who know how all this feels. The worse part for me is not yet being diagnosed and worrying about not feeling heard.

I've never been on a site like this before but I needed to not feel so alone in all this.

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Hi Nikkilama,

You are not alone! I am was lucky with a quick diagnosis however others have years of not knowing or misdiagnosis. I hope that they can run some blood tests or get a specialist to look at you so that you can have an idea as to what's going on.

For now I send my support and love

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That is so kind of you thank you 🌻

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Hi Nikkilama

I am in the exact same situation as yourself. I've learned from this group that a diagnosis could take years. It's so frustrating I know :( Have u had any blood tests yet ?

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Thank you for getting in touch. Yes I have and they have been all over the place. I know Rheumatology could maybe make sense of them. But still got to wait another 7 weeks to see them. Keeping some grip on how I am mentally coping is hardest right now.

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I'm glad you've been referred to a rheumatologist. I had to wait ages as wel. My symptoms were much the same as yours and my anxiety was through the roof. I made myself feel so much worse by this but how else are we supposed to feel ? My doctor put me on medication for the anxiety. She thinks I'm working myself up over nothing - lol.

Anyway I'm taking the Meds and although I still have the main symptoms, proves they're not in my head, they have been fantastic for the anxiety and taking them has allowed me to separate what was actual 'lupus'symptoms from what was the anxiety. I couldn't get over how anxiety could affect a person like this.

I wondered if this was something that you would possibly consider to help you to get through this ?

Hope this helps .

Best wishes

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Hi. Thanks for that. It really helps that I can reach out and speak to others.

My main anxiety comes completely from not being heard and not being believed. I get so upset thinking I will never get a diagnosis or help. I need help getting to remission so I can try and re build my life.

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Hi Nikkilama,

I'm sorry to hear that you are experiencing these symptoms and, as yet, do not have a diagnosis. Are you currently just under the care of your GP or have you been referred to a rheumatologist for further investigations? Have your doctors done any blood tests for lupus yet?

If you'd like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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It's been 14 weeks since it first hit. Last night my doctor insisted I go to A&E I sat for five and a half hours on a hard chair getting more and more ill. Only to be told I'm not having a heart attack and to go home. Now I can barely move with fatigue and pain and mentally I'm struggling with not being heard.

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No one is listening. No one believes me. No one is helping. I've spent many many nights in cardiac care. Pericarditis and effusion. I've got chronic Costochondritis and a large lesion has appeared in my abdomen. Rash all over my face. Tingling painful hands and continues mouth ulcers. And nothing being done. I'm self employed and almost bankrupt.

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If you are unsatisfied with your current doctors and they are not listening to you or requesting the necessary tests, then it may be best to change doctor. You can read more about doing this towards the end of our article here - lupusuk.org.uk/getting-the-...

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I've tried to change. But my doctors closed and 7,000 patients are now squeezed into their other practice. Loads of people have tried to move but all the local practices have shut there doors. I'm stuck there.

I've asked repeatedly for second opinions and been refused.

BTW. Who are you?

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Hi Nikkilama,

I'm sorry to hear that no other practices are accepting patients. Have you tried contacting your local Clinical Commissioning Group (CCG) to see if they can offer any advice? You could also look into placing a complaint; NHS Complaints Advocacy can help you with this - voiceability.org/support-fo...

If none of this works then it may be worth talking with your local MP to see if they can provide any help in getting you the necessary referrals.

My name is Paul Howard and I am the Social Media & Projects Manager for the charity LUPUS UK, as well as the administrator for this forum.

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Thank you for taking the time to write Paul. I have a technical query. I can only see 3 lines of what I write. The rest is hidden under the keyboard which takes up half my iPad. I cannot see anyway of adjusting this. Can you advise please.

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Hi Nikkilama,

I'm afraid I'm not very good with the technical questions (especially if they are about iPads, as I don't own one). You could try downloading the app, which may work better on your device? - itunes.apple.com/app/apple-...

Alternatively, you can try contacting the HealthUnlocked technical team by emailing support@healthunlocked.com

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