[FranS]

Yippie, finally...diagnosed!

I posted the first time quite a few months ago, was diagnosed with DLE in 1998 & have been suffering more & more with tiredness, aching joints, headaches, nose/mouth ulcers as well as the butterfly rash etc since, with the worst year being this year with flare up month after month. I've been badgering my GP to do something & he had insisted it hadn't progressed into SLE but that it was either just the DLE or something else.

Anyway, after many tests he decided he didn't know what it was & maybe my job (van driver) was just to physical for me & that there was nothing wrong with me!. I then INSISTED, with the support of people here, that he sent me to Dr D'Cruz at St Thomas'. He referred me & I got an appt in about a month with Dr Currado but after talking to people here I had decided that I would be more confident with Dr D'Cruz (as my bloods had come back negative - well the ones that had been done). After more GP contact & calling St Ts' I eventually got an appt but after quite a wait.

I went to see him last week & described my symptoms. Without hesitation, plus without blood tests, he confirmed he was positive it was SLE & agreed that it may not show on the blood tests. I was so pleased I burst out crying when I came out.

After all the time & trouble I had with my doctor over the past 10 years & I got the diagnosis straight away from him. I was so relieved that he had acknowledge I wasn't making it up & it was real!

Anyway, he put me on Mepacrine as well as the Plaquenil that I'm already on & have an appointment to go back in 3 months time. I have a question about Mepacrine but will post a seperate thread. Did urine tests & a whole list of blood tests...think they took about 2 pints!!! lol!!

I had stopped the driving job as after speaking to people on here as well as family/friends it seemed the general advice to me was to stop the job as it was making things worse (because of the sunlight in the van plus the lifting/long days). I took 4 weeks off to get some rest & have now started work in a residential home for older people with learning difficulties which so far I love.

But the one thing that Dr D'Cruz said was that when I am tired there is no drug to help & that I just have to rest, same as when I ache. My boyfriend was in there with me which I was glad of as he heard him say it as I feel so guilty when I have to sleep/stay in bed.

So Hurrah for St Thomas'!!!!

Fran
x

 

[Katharine]

Hello Fran and (((((((hugs))))))) to you

I'm so glad that you have finally got answers and that they have changed your treatment to help you further.

Here's hoping that it's the start of a new, better chapter for you.

It's hard not to feel guilty when we need to rest. Many of us have been "conditioned" to feel guilty for countless reasons. However, it is something that we all have to learn. To rest when needed without feeling that we are bad people for doing something we need to do.

All the best,
Katharine

 

[nicky00]

Fran that is such brilliant news.

I also eventually went up to St T's, (long story). They are first ratre.

My Rhumatology appointments are all in Sussex with my consultant here.

I had to fight a bit to get the Sussex Rhumie to include Mepacrine in with the already prescribed Plaquenil mix.

What you posted was most interesting. I will be interested to hear what your Mepacrine questions are..

dashing to work now so keep posting!!

Nicky

 

[LolaLola]

Dear Fran, I remember you and how you were struggling. I am so glad you had your appt. and that it went well. Dr. D'Cruz is wonderful and could obviously see how much you've been through.
Love Lola x

 

[cemc]

So pleased you finally have the diagnosis and hav e got appropriate treatment for it now. Lets hope that my experience in London will be as positive! (in a couple of weeks time, at the London Lupus Clinic)

 

[birdie]

its always a big relief that after being seen at tommies the big relief that we all feel. I can remember feeling exactly like you and again Dr D'Cruz never laid a finger on me and siad Yes you do have lupus. Its like a big weight has been lifted from you and that you can now go forward at long last instead of beign in limbo land. Hope your new meds kick in quickly for you.

 

[julsie]

Hi Fran,
I am so glad you finally got somewhere.It must be such a relief to find someone who takes you seriously.Hope the treatment helps.
Julsie

 

[heavenly]

Fran

Fran, welcome to the group! I haven't been on in awhile, but am in long flareup, so knew it was time to come back. I was reading about your last doc & your insistence (amen!) to get to St. Thomas.

Wow what a great story of how that all turned out for you there! And how much they cared & took their time w/you. And as we all know, just to know they BELIEVE in you and really listened is awesome!! :thumbs: And they're treating you as well.

Man, I REALLY WISH they had a St. Thomas branch over here in many areas of the U.S. That would be soooo helpful!! Just so glad you finally got there. What a great blessing that is to know you're under such great care w/your new doc. :bigsmile: