No name given yet, but finally I am diagnosed as having a rheumatic disease. Need to have a lot more tests done to confirm the anti bodies.

[Lisalou19]

Finally finally finally!!!! I have no name yet for my disease as they want to run a lot more tests to confirm the anti bodies that are present .

Just to finally be told yes “you were right” feels like a weight lifted. Although there is muscle concerns , I will deal with those later

Thank you once again for all your advice , I wouldn’t have got to DR D Cruz without you. I’m also getting a skin biopsy today while here as an emergency as rash is present .

[EOLHPC]

🌟🌟🌟🌟🌟YAAAAAY LISALOU 💐💐💐💐💐

👏👏👏👏👏THANKS: GREAT START TO 2019

🍀❤️🍀❤️ Coco

[Lisalou19 in reply to EOLHPC]

11th January 2018 I said to myself I will fight and get a diagnosis within a year. I just made it. Very mixed emotions right now, mostly anger to all the medics who just dismissed me and my family , I know they thought it was in my head . X

[EOLHPC in reply to Lisalou19]

You are AMAZING: this IS MEGA!

CONGRATS to you & your supportive family!

I know my version of that anger WELL: this is THE PLACE to let it all hang out + find true understanding...this anger is something most of us feel on & on cause multisystem illness like ours means we’re destined to a lifetime encountering many medics who haven’t a clue...

XOXOXO

[Fennella02 in reply to Lisalou19]

I would be angry too. Medicine is not an exact science and no two people are identical. That aside, YIPPEE!!!!! Well done xx

[whisperit]

Well done on being so persistent. Keep going and keep in touch x

[Lisalou19 in reply to whisperit]

This site is my saviour, I will always be apart of here. I am around people who get me, and I understand their pain too.

Hopefully my posts will become more positive xx

[Lili18]

Hi Lisalou,

Im glad you’re finally getting somewhere. The unknowing is the worst, i think. You are right about the weight being lifted. When first diagnosed, i was torn between elation at knowing that i was not crazy as i had thought my entire life and the fear of the disease.

Anyhow, good luck to you

Xxx

[MEW53]

Lisalou19 Glad to hear you are getting somewhere.

It’s very strange when you first have a problem no one seems to realise there may be something seriously wrong. Good you were persistent at least you’re getting somewhere at last.

These autoimmune diseases are so difficult to diagnose.

Keep us posted.

Good start for 2019, good luck👏

[Lisalou19 in reply to MEW53]

These diseases are nasty, not only do they hide most of their symptoms, they are awkward in showing their selves through blood too 😡 I hate this body I live in 😔. But I’m going to gain strength and work towards being strong again xx

[KayHimm]

You have been and still are a diagnostic dilemma. So happy they have confirmed that your disease is inflammatory. That, to me, matters more than the specific name. They will do everything to pin it down. But even if they cannot be specific, they can treat you just the same based on the symptoms. I love the way a rheumatologist described to an interviewer that autoimmune diseases are not black and white; they come in different colors and shades. You are your own color and shade! Hoping for all good things for you.

[Lisalou19 in reply to KayHimm]

That’s a beautiful way to put it, im definitely my own colour , mostly bright red with rashes 😂😂😂.

[KayHimm in reply to Lisalou19]

I am glad you liked his description of his patients. I hope soon you will be a little less red and feeling much, much better!

[Kevin53]

Yes the important thing is early treatment; the badges can come later! Best wishes Kevin

[Lisalou19 in reply to Kevin53]

Thank you. All I’ve wanted is treatment to give me a better life x

[Lupiknits]

Good for you Lisalou 🍾

[eekt]

Well done Lisalou, so VERY pleased for you...hoping that things just keep getting better! xxx

[happytulip]

Well done Prof D'Cruz!! An approachable rheumatologist who believes his patients and asks all the right questions with his inquisitive mind! We need many more like him.

So glad that you are on the right pathway x

[Lisalou19 in reply to happytulip]

His amazing, and he really does listen and acknowledges your physical symptoms.

I hope his training some good doctors to take over when he retires x

[Krawlins]

That's excellent news to hear, at least a thorough investigation will begin now, how nice to finally be heard, I can't convince my medics that all my many symptoms must surely be linked to one disease but I'll keep persevering. For me nothing showed in the blood tests, all negative, just some random above reference range, low VitD and B12 but always high CRP. I think I've little chance of being referred back to rheumatology in the near future but can you tell me if you saw Prof D'Cruz privately and where he/she is based?

Good luck on the next chapter of your journey, here's to successful treatment in 2019.

Kay x

[Lisalou19 in reply to Krawlins]

Hello Kay

My battle has been years, so firstly you know how you feel, regardless of bloods. I have seen every type of doctor possible and no results. Thanks to this site I posted about experienced doctors and I ended up in front of professor D Cruz private clinic in London Bridge . It cost me £230 to see him and this was the best money ever spent. I then got referred to his nhs clinic in guys. I had approximately 16 tubes of blood taken at my first appointment and was called back in just over 4 weeks for the result. He screened for anti bodies that cover everything, which a normal rheumatologist may not have knowledge in.

If you can get to him, it is so worth it. The first doctor in my battle to sit down and say “you were right”. Xx

[Krawlins]

Thank you so much for your reply, I'm very grateful you told me how much it was too. I hope this year to be able to afford a private appt, I might then feel satisfied with the conclusion, for the time being I still don't feel I'm finished with rheumatology. When I had a hysterectomy and had to have a blood test before hand it came back with positive irregular antibodies, that's never been pursued but I have a lot of joint and muscle pain, episodes of hair loss, bleed in the eyes, rashes on arms, dry everywhere, tachycardia and I do wonder if it's all linked to something autoimmune?

Hope you get some answers soon with a remedy to help ease your suffering, good luck 😉

Kay x

[Lisalou19 in reply to Krawlins]

Most rheumatologist only screen for the usual stuff they know. I’ve had so many bloods over the years and they were always negative. I actually got so frustrated that they were always negative. If you do the one of consultation let him know you can not afford private care. He wrote the best of letters to my gp to get a second opinion even though I was under a rheumatologist at the time

X

[Krawlins in reply to Lisalou19]

Thanks for the tip x