LUPUS UK
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How to baffle a rheumatologist:

Private consultation (I’m lucky enough to be able to claim back this cost from work) at Alexandra Cheadle with recommended rheumy. Seemed more fixated on my latest issue - Thunderclap and chronic headaches that resulted in Limbar punctures and resulting post dural headache than anything else. Said it’s all neurological and tried to pass me off to a neurologist. I asked what he thought about my on going rheumy symptoms and he replied he was baffled cos they didn’t add up to any one thing.

Where did this tick list diagnosis come from, what about me and my real health problems? I’m a shadow of my former self. Even a car journey and buying a sandwich in Morrison’s yesterday resulted in a 2.5 hour ‘nap’ and this morning I’m totally wiped out. Bugger ... I’ve actually started crying.

Anyway managed to get full MRI and nerve function tests booked in. His last comment was ‘Looks like it might be viral’. Grrrrrrr!!!!!

Back to GP on Monday. Sigh.

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You poor poor thing.

Viral?? Does he mean that a virus may have triggered all this perhaps? - like the post viral arthritis I was initially thought by my GP to have, following swine flu? Viruses can trigger autoimmunity but the symptoms you describe do not sound like part of a virus to me?

Have you been referred to an NHS rheumatologist or sought out a Lupus expert? I had a rheum do same to me and it’s a horrible feeling I know. I finally got diagnosed with Sjögren’s in 2016 after a five year battle with diagnostic uncertainty. Hang in there and trust your instincts to guide you. You are living with this hellish stuff - he isn’t. X

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Thanks twitchy!

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MsAndylvy, i can relate in regards to how you feel especially the shadow of your former self. I agree with twitchy.

Don’t let him fob you off, can I ask what other tests you’ve had done ? He should assist not dismiss. I’m a little bit like you, & I’ve struggled to be heard, & taken seriously, which is very disheartening at times, but stay strong & persevere. Keep fighting for an answer. Xx

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I deffo won’t be fobbed off (hopefully) but my sis took 10 yrs from swollen knees to diagnosis.

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I’m 14 years+ & had one new diagnosis for stomach problem but I’m still battling for a Autoimmune x

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I’m preparing myself for long waits and frustration. 😆

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‘They didn’t add up to any one thing’?? They often don’t because the immune system is so vast and overlap is the norm. There is no ‘box’ that each of us fits in to. Keep going back and back until they address the issues with a view to improving your life. Xx

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Perhaps look into high dose vit D supplements. I am not suggesting it will fix everything but I think it is giving me a little bit more energy.

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Hi thanks for that. I currently rattle when I move because of the number of supplements and vitamins I take. Vit D, B, glucosamine, active colloidal silver and co enzyme Q10 seem to be warding off bad flares and colds etc, but that could just be a coincidence.

Anymore recommendations greatly received. Taking themgives me something to do when I wake up and I’m waiting for the rest of my body to catch up.

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I really can’t see why they don’t believe us. We tell them what we are feeling and they dismiss all the symptoms you have just described. When we go on the Facebook sites there are so many with very similar symptoms to us. I don’t believe most national health doctors nurses and rheumatologist’s know the complexity and variety of our symptoms

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Perhaps the medical profession do but NICE recommendations won’t let them diagnose.

It’s so frustrating, I am ill. Quite ill (and I’m a very tough cookie with a high pain threshold) and I go on until I almost crawl. I do not want to give in but have to. I’m going to try next appointments with unwashed hair, crappy clothes and no make up and see if that gets me any further.

I just want to feel better please.

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Yes when you look ok it’s human nature to see you differently. I have been in a wheelchair and still they wouldn’t listen. Some are better than others. What we need is to be beloved and for all our symptoms to be reconised is that to much to ask 😘

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Oops another teary moment! Xxx

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