Utter waste of time...

[Charliebear68]

Hi guys - feeling so disappointed with my appointment. I'm beginning to think I'm psychic or is that psychotic?*!#...

As I said earlier - I was feeling anxious and emotional but I just had that 'feeling' you know the one 😐 Anyway, went in and handed over the blood test from this year so far and he just read through them and took notes onto the referral letter - not even on my file - and didn't say anything for ages. I did say he could keep the results but he said he was just taking notes. After about 10 minutes he declared that all the bloods were fine except the anticardiolipin antibody and he would explain that in a moment. My calcium is low, my vit d is low, im heamolysis positive, stage 1 CKD...and borderline on some others. He said that I had CFS and offered me gabapentin for pain relief, amatryptalline for sleep (believe me, I don't need any help with that!!!) Told me to go swimming (I think he wants to drown me 😆) Graded exercise with a physio and surprise, surprise CBT (aka in your head). He didn't ask about my history, my current symptoms or do a physical exam. Not even repeat blood tests...B lost his patience by this stage and told him that he wasn't satisfied with his decision and that we wanted a second opinion. He did seem taken aback and kept repeating that there is no cure for CFS and his advice was as per NICE guidelines. As we all agree on here - I know my own body and I haven't got CFS.

So - my anticardiolipin is 16 and should be less than 8 but he seemed to think that this was just 'slightly elevated'. So I asked him about Hughes Syndrome and he said you don't get fatigue with that...I'm sure some of my good friends on here will disagree with that. So I said that I disagreed with him! I felt like he was just looking at the bloods and not the whole person and I told him so and that I wanted to see a rhuemy that specialises in autoimmune. The only name I could think of at the time was Dr D'cruz. Wow, did his attitude change then - was extremely helpful and gave several names we could see for second opinion. Advised to have repeat anticardiolipin at end of May before second opinion.

I didn't get to ask any of my questions - is my hypermobile joints have any impact on a diagnosis? Didn't see the point. So now I'm back to square one again but at least I have you guys to help me with your support, encouragement and advice this time so I thank you all from bottom of my heart.

An extremely tired Charliebear xx

[Hidden]

Hell's bells Charlie?😩 How can he just say that you have stage 1 CKD without looking into the cause? And that's just for starters. I'm on the move just now and fingers jippy but I think this sucks and you should defintely be looking for a second opinion. CFS with stage one CKD and signs and symptoms of APS? Hmmm not surprised you're exhausted at such a daft suggestion - but so well done to you and your husband for holding your own brilliantly by the sound of things. Things can only get better. X

[Charliebear68 in reply to Hidden]

Hey twitchy,

I'm down but not out chick 🤗

I'm keeping up to date by reading your posts - jippy fingers aside, glad you're on the move.

Charlie 😘 xx

[Lupiknits in reply to Charliebear68]

Yikes Charlie, down but not out. My admiration and a big hug xx

[Tara1_]

I recently visited the world's worst rheumatologist. He ignored all my symptoms and simply waisted my time. He actually said "as you merely don't want painkillers then you obviously have a low to no pain threshold for any pain " WHAT AN #@$/^^'$. I am deadly allergic to any painkillers. Then not only said I had simply cold knees and need to just rub them. I now have to use an electric wheelchair to get about as my joints just give way and I'm in permanent agony. Then topped himself by giving me a prescription for meds that clearly say not to be taken by a female let alone one with heart problems. That man was deadly dangerous let alone the fact I was in agony after the so called appointment and have photos of the hand marks and finger prints on my knees and hands/wrists. Bruised badly and was in agony for days. That man should be struck off.

[Charliebear68 in reply to Tara1_]

Good grief Tara - what a frightening experience for you. Please tell me you've complained? This is appalling - if you weren't so on the ball, you could have ended up in a right state! When did this happen? I hope you're getting better care now.

Charlie xx

[Bacardibabe76]

Wow Charliebear

That sounds really annoying, I know it's frustrating when you feel like they have not listened or cared and it's a waste of effort.

I am glad both you and your B stuck up for yourself and he started to buck his ideas up in the end.

Him saying you dont get fatigue with APS (Hughes) is wrong. It most definitely is a symptom. I am under dr Sangle and prof d'cruz at guys and they are h see the impression that my fatigue, headaches, brain fog, irritability, mood swings, noise sensory overload among others is my Hughes playing up and not my lupus. There are some overlap symptoms with lupus but they feel the lupus part is not too bad at the moment (although I would disagree, it's seems to be rearing its ugly head at the mo).

He can always refer you to guys for another opinion. They do far more testing than local rhuemys do, so much more in depth and if you need 50 mins to discuss problems, you get it. But that does mean clinic can run behind.

If you are not a part of the Hughes syndrome - sticky blood forum on here. Please join, they are a great bunch and MaryF is there too 😀

Keep fighting and stay as well as can be 😀

L x

[Charliebear68 in reply to Bacardibabe76]

Hi Barcardibabe,

It's such a disappointment when you feel like you've been ignored. I know I'm not the only one going through this and in a weird way, that gives me hope.

I'm looking into whom I need to be referred to next and I do think that Dr D'cruz is the best to talk to. I feel like I've got so many symptoms of different autoimmune that I don't know what to do to be honest! My bloods seem to be saying one thing and my body another at different times!! I have always said my body hates me 😐 I have dermographism which looks appalling - B tells me off because he knows when I've scratching...looks like I've been whipped! Oh if I only had the energy...oops too much information 😅😅

I will keep on fighting and your support is worth its weight in gold 😘

Keep well too and have a fab weekend.

Charlie xx

[Bacardibabe76 in reply to Charliebear68]

Lol, you can ask for a referral to prof d'cruz at the Louise coote clinic. They see people from everywhere. Your consultant just sits back and waits after 😀.

Hope you get somewhere soon.

Have a great weekend too xx

[Wendy39]

Oh no! You poor thing! Nothing more frustrating. I think you and B handled that very well! And well done for demanding a second opinion there and then. Having now been confirmed that my diagnosis of the last 3.5 years has been wrong and only just getting my second opinion, I would say if they are willing to send you to London to see Prof D'Cruz grab that with both hands. I failed to be granted an NHS second opinion. I wish you well. Kept us posted. X