[Parkesy]

OK so finally after 6 years of "we dont know" from the doctors & after spending a fortune on private consultants over the last year to get a diagnosis he finally told me today that it is lupus that I have.

It may sound crazy but it is the best news I've ever had, mainly because I've had the stress over the last 6 years not knowing what was wrong with me but now at least I can stand up & say I know what it is!

I love the fact that I now know what it is & am so over joyed it is unbeleiveable! I have had the biggest grin on my face all day! & its the happiest ive been in 6 years, at least now I can pick myself up & start living a life without a 6 year long question!

Love you all you're all great!

 

[specialk16]

Glad that you are area able to finally make some headway regarding your health. Now you can focus on trying to live with this disease. And you are right, you can kind of move on with your life... you can no longer feel like a science experiment... :lol: I know I was starting to feel like a human pincushion lately... :blush:

Take care and hope you are having a pain free day!

 

[nicky00]

Hi Parkesy

Anytime to have to wait for a lupie is endless but I have to say 6 years in incredable!!!.

Knowing how I felt when the 'unknown' loomed into the exhausted never ending journey of trying to discover why I felt like this was I can say so overwhelming.

I comepletely understand your euphoria at finally getting an answer. At the end of the day its getting the right treatment that counts whatever you have.
Now you can begin to find ways of dealing with everything. There is more hope.

Good News I am so pleased for you!!

Nicky

 

[Katharine]

I know the feeling!! I've been there too.

Congratulations, if you see what I mean.

Don't be surprised however if you do suddenly get hit by less positive feelings at some stage. I think it happens to us all. For me, it happened about a year down the line.

I hope you will now get adequate treatment and start feeling a lot better,
Katharine

 

[marymackay]

Congrats?

Hi Parkesy
so great for you:lol:. I remember your post from last week- and I thought poor you, but we all know in our hearts that something has been so wrong with us, perhaps even over our whole life.
Luckily after several specialists last year I heard 'lupus like symptoms', and onto Plaquenil which has helped a lot:wink2:.

So I know how you feel-possibly. I still have symptoms cropping up all the time :hehe:- tests for this and that, and many probs- but the relief when some d/x occurs. So we look forward to seeing your posts and how you get on.

 

[CJ83]

Like you I too waited 6 years before being diagnosed (and spent a small fortune) and ironically i was diagnosed on Tuesday this week.

It's a strange feeling as you are not happy that you have confirmation that something is wrong with you but happy that you know what it actually is and can get on with managing it without the struggle of trying to convince everyone you're not going crazy.

Look forward to speaking with you soon.

Claire.

 

[Parkesy]

Yeh I know the relief feels like a weird kind of one but I am so happy that I know what it is & can start getting treatment I shoudl be getting, the happiness I know will subside after a while but at least I will have the docs & you guys & family for support

Amazing how the NHS takes sooooo long but as soon as your grease the wheels with cash things seem to run alot smoother & quicker, god knows why we even bother with the NHS,

Thanks to everyone, love u all:hehe:

 

[Surferboy]

Parkesy, I can kinda see why you are so happy. At least now you can get on that track to feeling better

As for the NHS thing... I used to be such a firm believer in the service. But now I go to hospital or to the GP and just think "what a shamble". But I am still holding out on it improving!!

Wishing you the best of luck

 

[KarolH]

Parkesy,

I have been pretty sick since 2003 and got a dx of MS in 2005.

Just yesterday I got the dx of Lupus so for me the journey started 5 years ago and as I have walked the path of MS I have taken interferon drugs that I did not need to take.

I always knew that I did not have MS deep down inside. It was only recently when the latest blood work came back crazy that my Neurologist finally said he thinks I am right in that I do not have MS but probably Lupus.

My reply, "Ummmm, do ya think so"?:rotfl::rotfl::rotfl:

 

[Parkesy]

LOL! to be completely honest I seriously do hope the NHS improves alot & soon, I am quite fortunate in being able to pay for my private medical care but tbh if I wanted to do that shouldnt I be living in the USA or somewhere like that? lol

I know what you mean with the dx's I however refused to take any drugs based on a "maybe" but thats because Im a stubborn git lol! unfortunately from my understanding Lupus is quite hard to actually diagnose & it does take a **** of alot of pushing from us over here for the NHS to stand up & listen

My heart goes out to you for having to wait that long & also with being mis-diagnosed.

Although I am only 21, I had to grow up & become alot more mature alot quicker than I should have been, but hey doesnt everything happen for a reason? & doesn't everything happen for the best?