TheLupusSite.com banner

1 - 12 of 12 Posts

·
Registered
Joined
·
1 Posts
Discussion Starter #1
Hi all, I'm new to the site and can't believe the way all the pennies are dropping! I have battled for the last 4 years to get doctors to listen - I have been told it is all in my head (by a neurologist, no less!:eek:), it's my age, had my blood tests results ignored, had a rheumatologist look at my face and tell me I haven't got Lupus (I paid for his consult too!), have a GP that treats me like I'm a Hypochondriac (actually that's my husband), and an unsympathetic husband! Ive even had brain surgery for a cerebral aneurysm!

Yesterday I see a new Rheumatologist who (apart from looking like she was going to personally shoot every doctor I have seen in the last 4 years) said:
"You've got Lupus - blood tests will confirm it - it was obvious from the ones you had last year that there was something very wrong - why didn't they follow it up?"

I've spent the last 24 hours reading about my symptoms being listed on Lupus fact sheets, symptoms which I have had for the last 4 years, and still can't quite get to grips with actually KNOWING that I'm not daft, there is a name for it, I can live with it, and now I can get on with my life instead of being in limbo and feeling stupid!

THANKYOU EVERYONE!

Jen (aka Tigs):):):):):):
 

·
Moderator
Joined
·
11,405 Posts
Hi Jen,

It is nice to meet you. :) Welcome to the lupus site.:welcome:
Sounds like you have a wonderful rheumatologist. There is many on this board that have traveled that long road to getting told they have lupus.:hug:

It is a roller coaster ride of emotions when you get told you have lupus. You have a wonderful, positive attitude.
I always say that knowledge is power, then you will know what to ask and look for in regards to lupus.

Take care,
Lyn
 

·
Registered
Joined
·
150 Posts
glad to see you here

Hi Jen
so glad to see that you have been able to get a good rheumy and have at last got a :wink2:d/x.

I too know how hard it is to find medical people to give us support. :eek:One d/x last year was lupus/like symptoms, and in Sep was able to go onto Plaquenil that has helped slightly. Like you I had a cerebral aneurism operation at a young age:(, but have gone on to bring up my four, do all that I want, even after a seizure, then a stroke when I couldn't talk, and then gone on to be happy and successful.;)

Have had symptoms all my life, but in the last 5 years they have multiplied, and over last 3 years have had to make doctors/specialists take notice, and still am.

I have gained much information, friendships :hehe:from our site, and other online both U.K and U.S, and Chat rooms.

I look forward to your posts and your continuing upward swing.
 

·
Registered
Joined
·
6,152 Posts
Welcome Jen

Im very glad that you found us. What a story! :mad: What a bunch of incompetent medics you have had the misfortune to come across for the last number of years. :hugbetter:

I sincerely hope that their incompetence hasnt led to more serious complications for you and that today sees you on the road to better health.

Getting a Lupus diagnosis is a lot to take in all at once. Its more of a process getting to know your body, the medications, etc etc. Just take your time and we will be here to help you.

I hope your new Rheumy will give your old docs a piece of her mind :mad:. If your GP is totally useless and your relationship has gone sour over the years you might consider putting a plan in place to change if thats possible. But first things first....

Welcome again and I look forward to getting to know you

Luv n stuff
Joan:rose:
 

·
Inky
Joined
·
249 Posts
Welcome to the forum Jen

I know it is hard getting a diagnosis, but it is also such a relief to be believed and to have someone like your new rheumy to take shared responsibility for your health. Having a good rheumy is truly a blessing with this illness.

I was misdiagnosed with both ME and then depression before finally getting to the bottom of things. It was a site like this that pointed the way and got me asking the right questions. Before that in my 20's and 30's I had a total of three weeks in hospital for investigation of unexplained glandular problems and kidney infections which led to no further understanding of why I was ill. I met plenty of GPs who thought it was all in my head (usually men! :lol:)

Hopefully now your husband will be able to have a little more understanding and sympathy for what you are going through.

You will get lots of help and support here, I find I can ask any questions and no one thinks you are daft at all.

Love
Sara
x
 

·
Registered
Joined
·
7,800 Posts
Hi jen aka Tigs :)

How maddening :wall:

I think many of us have had similar stories and the only consoling thing is that finally you seem to have found a decent rheumy who sounds, quite rightly, incensed by the other docs' stupidity!!

I really hope that she will be the beginning of a new beginning. She can hopefully suggest good consultants if you need them (such as a good neuro) and maybe taking your hubby along to an appointment would go an awful long way to him understanding that it's not in your head. Remember that true hypochondriacs don't know that they are. We have all been down that road and it's an idea that you have to totally banish from your head now.

It is very difficult for others to understand our illness as, for most people, it isn't very visible. If we're honest and we looked back a few years, we would have had a job believing someone who was acting like we do too. I mean, most of us seem to have been pretty active, feisty people and would have said that that person needs a good kick up the rear end....Isn't it awful.

This site goes a long way to unburdening loved ones and gives us an outlet where people who truly understand can give us a helping hand.

I would also consider changing GP if at all possible... Then again, he might suddenly change his tune when he gets the rheumy's report. Let's hope so.

bye for now,
Katharine
 

·
Registered
Joined
·
150 Posts
Hi Jen,

I just had to reply as I notice you're from nr Folkestone, Kent - only so am I!!

I'm glad to hear you're finally getting somewhere with the tests etc and getting a diagnosis and then hopefully the right treatment and plan. .. .

I've got SLE and APS and an immunedefciency called CVID which is pretty rare.

I belong to two local support groups and would be pleased to talk to you.

Cathy x
 

·
Registered
Joined
·
5,267 Posts
Hi there.

Glad that you have found a doctor who is listening and finally going to help you.

It is amazing on how long it takes for some people to actually receive a diagnosis.

I know there is a lot of research, etc. about Lupus now, and I do hope that someday soon, it becomes a little easier to diagnose someone.

Good luck with your testing and treatment.
 

·
Registered
Joined
·
1,110 Posts
Yo! Way to go Jen!

I know exaclty where you are coming from. Had similar experience until met an enlightened specialist.

All the best.

:love:
 

·
Registered
Joined
·
1,101 Posts
Hi Jen,
Sorry you have Lupus but glad you have finally found an MD who could put it all together. I was of very mixed feelings when I went from being a medical mystery to a textbook case.
All the best,
Douglas+
 

·
Registered
Joined
·
594 Posts
Hi Jen,
Welcome!
I am sorry for the awful experiences you have had but, glad that you have finally found a doc who is taking you seriously.
It's also really good that you have come here, everyone really supports one another and there is alot of knowledge between the members.

Take Care

Good Luck

Cassie :)
 
1 - 12 of 12 Posts
Top