LUPUS UK
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Second Opinion Next Week ๐Ÿ˜“

Good morning my wonderful friends,

Sorry been very quiet lately but I'm - to be blunt - knackered ๐Ÿ˜‘ Still up and down the M6 to see MIL and I'm so tired that I can't think straight. I can just about manage to shove some slap on - usually whilst B is driving - so I can play the ' I'm fine' game.

I've been keeping up with your posts - so much has been happening! Good and bad...Twitchy feeling so poorly, so unlike her. She's amazing and has wonderful advice, I'll just send her my love and hope that she's soon on the mend ๐Ÿ˜˜ Wendy! What a fabulous outcome. You're my inspiration chick. I've read your letter and I could cry tears of joy - which does sound rather odd considering you've just been diagnosed with SLE! But you know what I mean ๐Ÿ˜† onwards and upwards my friend, so proud of you ๐Ÿ˜˜

Well...as I out in the posts title, I have my second opinion next week - next Thursday at 3:30 at the London Lupus Centre - not sure if I'm allowed to say with whom the appt is. I am now pooping myself as this really is last chance saloon! I know I'm being daft but after 10 years of misdiagnosis or being told it's all in your head, it's kind of scary.

I love this forum - it has been a God send to me. I'm still fighting not only for me but for the countless others who will be told to bu***r off, there's nothing wrong with you. Still scared though๐Ÿ˜‚

With love and thanks,

Charlie xx

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Let us know how you get on. Best of luck with your appointment. I haven't been there myself but I've only heard good things about the London Lupus Centre.๐ŸŒธ๐ŸŒป

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Thanks my lovely - the thought of getting to London is a bit daunting but I can snooze in the car/train if necessary ๐Ÿ˜

Take care and I'll keep you posted.

Charlie xx

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I know just how you feel. Even though I finally got my diagnosis in march I won't believe it until I see it in writing. I'm scared that they will change their minds and the searching will start again. People just don't understand the need for an actual diagnosis a name to all the symptoms and a reason why we feel so ill. I really hope you get the answers you need ๐Ÿคž

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Aaw - bless you. I hope you get your confirmation in writing soon! I'm all over the place emotionally at the minute! But onwards! Next step London!

Keep us posted๐Ÿ˜˜

Charlie xx

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๐Ÿ™‹๐Ÿผ Am with sam13...even after 6 years of diagnosis, PTSD due to 40 years in the diagnostic wilderness means I'm ever-ready to be given that b***** o** line...to my face, in writing, whatever ๐Ÿ™…

Hang on in there charliebear...this consultant could be a Big Happy Surprise...this could well be your True Detective ๐Ÿคทโ€โ™€๏ธ: it happens!

And, if not, we'll help you regroup ๐Ÿ˜

๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜ coco

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Oh Coco,

You are such a thoughtful person ๐Ÿ˜ Still thinking of others..I have been keeping up with posts and I'm afraid I did giggle when I saw your bright pink tablets...I hope you have to chew or suck them! They're ruddy huge!

I'm hanging in chick - by my fingernails! Before they break off anyway ๐Ÿ˜…๐Ÿ˜…

B says we need 'House' to rule things out and be a detective! Great minds eh??

Keep fighting my friend and I'll be in touch soon ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜

Thank you,

Charlie xx

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๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ that's why I included the photo of the psychedelic pink tabs: hoped everyone would at least chuckle! how you swallow these tabs depends on whether you're treating symptoms of constipation or diarrhoea...you always chomp gently on the tabs (which turn into pink glue once chomped) to break them up a bit...then fast as poss you wash them down with water (lots of water if you're managing slow transit dysmotility, less if it's fast transit ๐Ÿ˜‰)

Take care buddy ๐Ÿ™‹๐Ÿผ ๐Ÿ€๐Ÿ˜˜

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Hi Charlie

Please don't fret too much, (I know I can't talk ๐Ÿ˜ฌ๐Ÿ˜ฌ). You will be prepared I am sure and I really hope you get the answers you are looking for.

Please do let us know how you get on.

L x ๐Ÿ˜€

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Hiya chick,

Haha! Birds of a feather ๐Ÿฆ Thanks for the support, it means soooo much ๐Ÿ˜˜

I'll deffo let you know.

Charlie xx

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Hello Charliebear68! Thank you for your very kind words!!!! Waiting to see my GP and get a response from the Health Board, wondering nervously how they will react. I really, really hope that your appointment goes well. I know how you are feeling. I was so nervous about my appt in London! I didn't sleep much the night before. In a hotel room in London, very noisey and so many thoughts running through my head. I was feeling sick with nerves the next morning. Like you. Thinking what if after all this fuss, he agreed with my diagnosis? What if he wants to reduce my meds? What if he says I can't help you any further, this is as good as it gets for you. These appts are hugely important for us aren't they, bound to be nervous. Is your other half going with you? Can't believe you are still making that journey! How is the MIL doing? Best wishes, Wendy x

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Hello my lovely,

Exactly! I can't seem to think of anything else! My mind just wanders off...no change there though ๐Ÿ˜‚

I think the health board will need to eat humble pie! Seriously, you have done something amazing! You challenged them and won - I know how difficult it has been for you and dealing with red tape at any time is daunting but on top of being g poorly?! You're awesome babe ๐Ÿ˜๐Ÿ˜๐Ÿ˜

My darling B is definitely coming with me - I wouldn't remember anything afterwards...plus he'll stop me being a jabbering wreck! When I'm stressed, I either clam up or have verbal diarrhoea with a few Spoonerisms thrown in for good measure...

MIL is still in step down - hopefully she can go home soon - I cannot even begin to tell you how upsetting this has been, all I will say is that it is a disease to be old in the UK, heartbreaking.

Thank you for your lovely message and I'll have you in my thoughts and hope your meetings go well - do let us know. I'll be thinking positive thoughts next week and will be on the forum for courage ๐Ÿ˜Š

Big hugs,

Charlie xxx

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Good luck for next week Charlie, I know exactly how you're feeling as do so many of us here๐Ÿ˜”.

Sending you big hugs and I've everything crossed for you๐Ÿคž๐Ÿคž๐Ÿคž, let us know how you get on.

Look after yourself

Diane๐ŸŒบ๐ŸŒธ๐Ÿ’xx

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Hi Diane,

Thank you ๐Ÿ˜˜๐Ÿ˜˜ This forum is such a lifeline. The support from my friends that I have found on here is overwhelming! I'm so touched by the lovely messages but that is where I draw my strength. Together we are strong.

Huge hugs and hope you're OK ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜

Charlie xxx

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Thanks Charlie, I absolutely couldn't agree more, this is the place to be๐Ÿ˜, I think I'd still be feeling very lost in limboland without you all. Big Hugs ๐Ÿค— ๐Ÿฆ‹๐Ÿ˜˜๐ŸŒˆโ˜€๏ธ๐ŸŒžXx

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Good luck Charlie for next week. Hope it goes well for you, no reason why it doesn't. I too have heard good things about the hospital!. As a dear friend says to me Courage Charlie. X

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Just found this post - been so sorry for myself all week that I missed it. Firstly thanks for the amazingly nice things you said about me! I went pink and it wasn't the viagra for once!

So much good luck to you for the appointment. Mind to maintain eye contact, have your A1 sheet of worst symptoms in bucket points and breathe deep each time you feel panic. So hope this works out and agree totally about ageing, nhs and disease re your MiL - it's rubbish. Xx

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Bless you - duly noted about eye contact.

No worries chick ๐Ÿ˜˜๐Ÿ˜˜

Charlie xx

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