Recommend a lupus specialist.

Hi everyone. I haven't posted in a while....just haven't been in the right head space and didn't want to come on here and lay my self distructive self defeitest attitude at everyone's doorsteps as you are all going through enough yourselves. So I'll try to remain calm and logical as I type. Lol

Does anyone know of a good private lupus specialist in the midlands I can go and see please?

I know my gp is overwhelmed and doing their best to protect me from going back to work at my supermarket because it's just to dangerous for my health. I also agree with them to however much id like to go back to work. I'd like to live more. Lol. My gp is going the extra mile for me. However my rheumy is useless. He's ignored my now out of control shaking. Was in one finger now in most of body. Can't hold a drink most days. I'm 48!! He read one article one day saying if you have no positive ana bloods you don't have lupus. We all know that's not true and the top rheumy doesn't agree with that paper either. However my rheumy is now questioning if I have lupus now. It's took 16 years to be diagnosed he is not taking it away on a whim! I will definitely loose my job as they will think lieing.

I have worsening pain in skin ,joint ,bones. My mobility is declining every week. I lost 4.5 stone blead Internally for months, my sugars have been 14 to 16 I shake I'm numb get pins and needles the list goes on and on. I bruise my legs hurt all the time. I can not and will not live like this anymore. 16 years of being told everything you all get told. Iv had enough. Iv watched mom for 31 years now being mis diagnosed to now find out she has a rare immune disease. Bit late now she is blind and bed ridden! I'm not going to exists like that. I wouldn't let a dog suffer like that either. That's my feelings guys. Not saying anything. Anyway I am moping now. Anyone who could recommend someone is much appreciated. Thanks for listening guys. Just know I do read your posts every day and they give me great strength and comfort so thank you everyone.

Nikki

[Horsewhisper]

Hi Nikki, sorry to hear you are feeling like this and it’s good that you can talk about it here. A lot of us are going through all sorts of stuff at the moment, yet we totally understand where you are coming from as many of us have been where you are now. I can’t recommend a private Lupus specialist in the Midlands but I can say keep on going...take photos, keep a log of symptoms, note down how they affect your quality of life and how your job may be at risk. I’m sure someone will be along soon with a recommendation, I really hope so. All the best and keep us posted as to how you get on x

[Krazykat26]

Hi Nikkisrf 🤗

There is a rheumy in Kettering called Dr Kuttikat..he works out of Woodlands Hospital but he also sees patients on the NHS..he has a special interest in Systemic Lupus.

I have no personal experience of him though as couldn't go private.

I'm sorry to hear that you're suffering so much at the moment but am glad u reached out to this community..coz we all know how it is n we understand..you're NOT alone 🤗🌈😽😽xx

[Hidden in reply to Krazykat26]

Thanks crazy cat I will go in investigate . It's worth an ask anyway. And yes this community gives me great comfort and keeps me from going mad most days. So as I say even if you don't see me. I am allways here 😁👍❣️

[Kath1]

Hi my rhumy is Dr Derret-Smith at the Birmingham QE and she is brilliant with me. I hope things start to improve for you.

[Hidden in reply to Kath1]

Thank you Kathy very helpful I'll go look now. Thanks again

[VickiR]

Hi Nicki. Sorry to read about your experience so far. I can totally understand where you are coming from. It is so hard when no one is listening and trying to help you. I had a similar experience at Birmingham hospital. But honestly - there is hope out there.

After having 4 years of not being listened to or believed, with various consultants saying although bloods were positive they weren’t quite positive enough - I took the advice from some people on here and paid privately to see Professor D’Cruz at The London Lupus Centre. This was done via video call, as it was just recently and I didn’t want to travel to London during Covid. Without doubt the best £250 I have ever spent. Professor D’Cruz really listened to me and looked at things with fresh eyes. He diagnosed me on this call and gave advice about seeing someone back in the NHS. Honestly, this diagnosis has transformed my life and now means I’ll get the treatment I desperately need. Keep going with it. And if you can - pay to see Professor D’Cruz. This group was so supportive to me trying to get diagnosed, there are people in here who can totally understand and empathise with you. Take care and let us know how you get on. Stay strong. Vicki.

[Hidden in reply to VickiR]

Thanks Vicki so so.much. iv just been turned down by one at birmingham hospital due to covid. So I will try this one. Gives me something to aim for what's £250 for getting the right help? I will let you know how I got on. Thank you again. Much love and hugs 🤗 x

[Hayleyrose28 in reply to Hidden]

I definitely second Professor D’Cruz. I see him at London Bridge and feel it’s worth every penny to get the right treatment.

I have just seen him again this morning - he’s very thorough and a lovely person (and I’m a harsh judge haha). I’m quite a complex case, but it doesn’t seem to faze him, and he doesn’t leave any stones unturned, and is very easy to talk to. I finally feel like I’m getting somewhere with my treatment at last.

Wishing you all the best and hope you get on well. Xx

[Hidden in reply to Hayleyrose28]

Thank you haleyrose much appreciated. I have sent an email off already to professor dcruz just awaiting a reply 😁. Feeling much more optimistic now so thanks. 👍🤗😁

[Chanpreet_Walia LUPUS UK]

Hi Nikki,

I’m sorry to hear of your current situation, I am glad you have written on the forum, you’ve had some great suggestions so far.

LUPUS UK have several Centres of Excellence across the country which you may wish to be referred to. Our lupus clinics offer a high quality of care for people with lupus and their families, learn more at

lupusuk.org.uk/centres-of-e...

Take care & best wishes,

Chanpreet

[Hidden]

Wow thank you so much for your help chanpreet. I will be looking into theses too. Much appreciated. 👍🤗😁

[Hidden]

I know she I completely agree with you. Yes the shaking is terrible at the moment. My sugars have been 13.5 and up to 16 but the gp said it's ok most people have sugars that high!!! I know I know my whole family are diabetic. But gp won't agree so what can I do. I went from 11.5 stone to 7 stone in less than 3 months. Iv blead Internally for 6 months all tests came back positive the gp said looks like ovarian and bowel cancer. They found fluid build up around my overiey. Then I had a camera both ways and surgeon said I quote.......just tell her she has ibs!! Now on 20mgs steroids so I'm now 10 stone and rising because steroid fat?! Lol I am so fed up of fighting the fight on my own

I just need to find a specialist who Will help me. I'm 48 and can barely type or hold a cup because I'm shaking like a 90 year old.

As you know it gets very very tiring. But hey how I'll have a sleep now and get back up and fight some more hey. Thanks for replying 👍🤗😁xx

[Hidden]

I know lol. My whole family is diabetic. I was told years ago I'll get late onset diabetes. (Long story). But I was fully expecting to get diabetes. It was my stand in rheumy who run me down the corridor dragging me (literally) because my water test had massive amount of sugar/glucose what ever in it. I then had 4 more blood tests over 3 months all showing I'm diabetic. Very high results. I then went to go to see what happens next. You know go to diabetic clinic start tablets or insulin? Lol no she sent me for a blood test that shows the last 3 or 4 months? Because my 4 blood tests were missing!? Anyway guess what?

Yes it came back fine!!!! I nearly fell off the chair! Ya know iv lost 4.5 stone. I'm bleeding internally. My mid rift was so tender I could not wear anything but joggers. I'd brought a glucose monitor and recorded my sugars 8 times a day every day for 3 months. ( My pharmacist told me to so this because the records will get me diagnosed faster with the history log! My sugars were allways between 9.8 and up to 16! I had all the usual sweats shakes blured vision even my breath stank of and tasted of fruit. Was vial.But I'm fine!! So I was told to go away. Lol honestly I could write a book! However on a very positive note professor dcruz 's secretary phoned me and we have worked out probably the end of November.if medical records come in time and I can afford £240 I can have an appointment with him. So I'm hopeful I can get it all together by then and he can finally help me or at least send me somewhere that can. So I'll keep you informed.

You stay safe big hugs and thanks again.👍🤗😁