[FizzyKiss]

Hi, I'm Samantha, 28. I'm from Southern California but soon to be Northern California.

After not feeling good for a year I finally gave in April of last year and went to a doctor. She blew me off as being depressed. She ran a test on my thyroid and since that came back normal, that was it.

I was frustrated and waited until Oct to see another doctor. This doctor told me I was nothing but a hypochondriac looking for attention. My first reaction was to scream and give up, but I couldn't do that. I needed to figure out what is wrong with me. So I called the nurse at my daughter's cardiologist office and seen if she could recommend a doctor for me. She did even better. She called and made got me in 3 days later.

This doctor finally listened to me! She did a bunch of blood tests, and several of them came back high, ANA being one of them. So she sent me to a rheumatologist, even made an appointment so I could get in a lot sooner.

He ran his own set of blood tests. Since. One of the tests he ran came back normal, but when the one doctor ran it came back high. So he decided to take some blood (or a lot) and send to UCLA and have them run all kinds of tests on me.

This was in March. Those tests show I have Lupus and Scleroderma.

I've been doing some research of my own, but I have found that I can read and read all I want, but talking to people that have been there and understand is so much better.

This was a little longer than I had planned on.

 

[Katharine]

Hi there and welcome

I'm sorry to hear about your diagnosis but glad that you did find out what was wrong. Diagnosis with these diseases can be a long hard road.

It was great that you eventually found someone to listen to you (doc wise) as that is so very important. What meds has the rheumy put you on or have you not started yet?

You sound like a determined person who knows when to fight your corner and that's very useful. Many doctors know little or nothing about lupus and the blood tests needed for diagnosis etc are often too specialised for GPs. Hopefully you will now be well followed up by your rheumy.

bye for now,
Katharine

 

[lazylegs]

Hi Samantha,

Welcome to the site. I hope you find it very helpful. The people here are great and very willing to share their experiences.

The nurse at your doctor's cardiologist is a gem. Without that foot in the door you may have gone much longer without a diagnosis. It is always good to hear about good things that happen in the health care system.

Take care,
Lazylegs

 

[FizzyKiss]

I'm on Plaquenil, started it the beginning of March, before I got an actual diagnosis.

I've learned to be a fighter the last few years. One of my daughters was born with heart, lung, and kidney problems. This has taught me a lot as far as dealing with health profession.

My biggest fear right now is we are moving in a few weeks due to my husband's new job. I finally got a diagnosis and I have to move and find all new doctors. I know the hardest part is the diagnosis, but its still a scary thought.

I had thought about keeping my rheumatologist here since I will be back in the area every few months, but he's sending me to a cardiologist and a pulmonologist which makes that kind of hard.

You sound like a determined person who knows when to fight your corner and that's very useful. Many doctors know little or nothing about lupus and the blood tests needed for diagnosis etc are often too specialised for GPs. Hopefully you will now be well followed up by your rheumy.

 

[Katharine]

Hi again,

It's good that you have started plaquenil as it is the baseline drug for lupus. It does take rather a long time to work, usually between 3-6 months with full benefits up to a year later. You may find that other drugs are added. Maybe just short term if you are not getting enough relief from plaquenil and NSAIDs or maybe longer term if your disease activity is more difficult to control.

Do you have heart and lung problems that you are being referred?
You will also need to find a new rheumy. For most of us the rheumy kind of becomes the primary carer and the others look after additional "bits" :lol:

Anyway, it sounds like you got a good rheumy there and I'm sure that if the new one isn't up to scratch he'll soon know about it :lol: or you'll know to find someone else.

There is a "find a doc" section here on the boards which might be quite useful for you as people can then recommend a doc in the area you are moving to.

best of luck with it all,
Katharine

 

[FizzyKiss]

The last appointment with the rheumatologist, he was asking if I had had certain symptoms of Scleroderma, and the only one I really have had is just walking can make me out of breath and I had a moment last week where just getting dressed made it so I was having trouble breathing. He wants to start me being monitored now since I haven't had many symptoms of it, so when the symptoms or signs start more frequently we are already a step ahead and can figure out what is going on faster.

Do you have heart and lung problems that you are being referred?

 

[Katharine]

OK yes, always good to be followed up. I too have quite severe breathing problems and have just had scans and all sort sof tests done. Thankfully they revealed that things are roughly OK for the moment but as the lung man said, he's glad to have some reference scan pics as a starting point.

Katharine

 

[KarolH]

Hi Fizzy and welcome.

I am new here too and not dx with Lupus yet.

I think now that you have a firm dx of Lupus finding a doctor in the North of Sunny California will not be so hard.

If I were you maybe a Lupus specialist is in order here.

Maybe your present doctor can recommend someone, after all they do seem to know each other even if they are miles apart.

Best of luck with the move and sorry about your diagnosis but at least now you have definite answers as to what is going on with you.

 

[Gwennie]

Hi Fizzykiss,

Just like to say Welcome to the site,i am fairly new here too.
I am also stressed at an imminent house move,new doctors etc too so u are not alone there either.
Cool name by the way.

 

[pennylp]

:welcome:

I am sorry you have gone through so much to get to a diagnosis.... It would be nice to go back to that doctor that told you, you were a hypochondriac and tell him what was found... That must have been so frustrating... It is nice to have you on the site... Welcome again...

Love Penny