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kirsten
07-28-2009, 03:59 PM
I could just die right now. I am so frustrated and upset. I just got back from my new rheumy. She's a lovely person. However, she decided, by only feeling my joints, that I might not have Lupus.

After being treated for 2 years and getting numerous blood tests, qualifying for the standard 4 out of 11 criteria, suffering with arthritis and extreme fatigue...wooops, maybe everyone's wrong.

She decided this because I have good range of motion in my joints and I don't (I never have...) show the skin symptoms of Lupus.

So Scenario 1: I don't have Lupus

WHAT HAVE THESE DOCTOR'S BEEN DOING TO ME? Why did the Prednisone help my symptoms? Why have I always had elevated ANA plus double stranded DNA and extreme anemia? Why do I have Reynaud's Syndrom? Why am I sun-sensitive? Why do I have swollen warm joints at times? Why am I always sick? Is this all a big coincidence?

This sounds insane, but the one thing I find comfort in is knowing I have Lupus. The years when I didn't know what was wrong with me, I felt like I was crazy. When I got diagnosed, I was horrified, but also a little relieved that at least doctors could now help me... and they did... so I thought.

Scenario 2: I do have Lupus

WHAT IS THIS LADY SMOKING? She has yet to see any labs. She is going purely off the fact that I can do arm circles and don't have a rash. Why do doctors always catch you on a good day? If she had seen me a month ago, I would have been much more "Lupus-y." My apologies.

I cannot stop crying. Once again, no one can tell me what's wrong with me. I took comfort in knowing that's how Lupus works, but what if the last 2 years have been a lie? I'm distraught.

Sorry for the novel, I just cannot believe this just happened. And if it turns out I don't have Lupus, guess I won't be posting here anymore. Not only am I lost without answers, but also shunned by the community I thought I was a part of. sigh.

Maybe I'm jumping to conclusions. Sorry. So much running through my head.

xoxo K

Spanglishqueen
07-28-2009, 04:06 PM
Hiya Kristen,

First of all you will never be shunned by us! You can always talk here several of us have gone through the diagnostic roller coaster "..Yes... No ....Yes.... No.... maybe come back tomorrow and I might know?" So you are not alone and yes it's frustrating and sad to want to have something even if it is Lupus. We need to know what it is in order to start dealing with it and get out of our depression. Feel free to talk about your symptoms anytime..we all have them and we can all relate. As far as the new Rheumy and diagnoses sorry it didn 't go how you thought it should...but tell her that and ask her to explain the other diagnosis and tell her about your non-flare days. Hopefully she won't be to quick to jump to conclusions, but if she is "there are plenty of Doctor fish in the sea" :cute: Hope it goes well sorry your bummed but here is my hugs and kisses you way. :hug: :kiss:

Leksie
07-28-2009, 04:09 PM
Kirsten hunny,

Please don't leave us because 1 doctor says maybe its not Lupus. We would have you either way, but to me it sounds like Lupus and if you've been diagnosed by another doctor don't just rely on the new one's opinion.
I think sometimes people say stuff out loud that they mean to be just thinking (we don't need all of a doctor's thoughts, all that does is create stress). If you have 4 of the 11 criteria to diagnose Lupus go with that and find another Rhuemy!!! Why did you have this new one anyway?

Try not to stress, it will only make your Lupus flare. I am sending you a shoulder to cry on, let it all out, you will feel better.:cry4:

Natasha

Angel Oliver
07-28-2009, 04:47 PM
Oh please take no notice of that doctor,get another opinion.I DONT have Lupus either and im still here.At christmas was diagnosed with it...then blood works came back...negative so now they say its Chronic fatigue syndrome n i have Fibromyalgia n other things. Please dont ever worry about being here...YOU BELONG and we all will support you and so understand the desperation n knowing the correct diagnosis.We have all been there and ARE there now right with you.You rest and tomorrow things will seem different.We are all figting for the 'right' diagnosis also.We know we hurt,we know we are not the same people we were before.I Know you belong....so keep posting.

Love n hugs
Amanda.xxxx

Oluwa
07-28-2009, 04:49 PM
Kristen...

Head hugs...

I don't even know where to begin...that is so insane, so inane...

How come she didn't see your past results? She should have requested them from your previous doctor or you could have brought them?

Did she understand you have been on drugs, prednisone to control your symptoms, flares and etc? Are you on Plaquenil too? If so, she should know these can cause our blood work to be negative...

Did she do additional blood draws?

If it isn't Lupus did she mention what it might me, could be....Sjogrens Syndrome...is she ruling out any other disease, syndromes?

Hummm...simple..she is incompetent. Rashes and joint pain...wow wouldn't that be wonderful if that was all Lupus was, eh?

My joints hurt awful and I can still move them, though I wince.

Not all symptoms are active at once...and not everyone has the malar or any other rashes. Unfortunately I am always scratching one...here or there.

And you don't have to flee...many here have been diagnose undiagnosed. I being one of them....and many haven't even had a diagnose. We are support not just for Lupus diagnose but to support and understand the ride of getting a diagnose. Pain is pain...you're in pain and so are we..right? So please stay...

And once family, always family regardless...
Love,
Oluwa

Pearl
07-28-2009, 05:52 PM
I'm on my third rheumy, if it's any consolation. Had to find one who gave a hoot about the labwork and about the symptoms. They both count. Sometimes, they even contradict. Doesn't mean there is nothing going on. Just means it may be a little harder to figure out. Unbelievable that your doctor would come to the conclusion that you don't have lupus because you have range of motion and your skin shows no signs of lupus. Hello...bloodwork, diagnostic criteria, meds that alleviate symptoms.....

Some lupus patients don't have sun/skin issues. Some lupus patients have good range of motion. Not that I want you to have lupus, don't get me wrong. I am just so done with doctors who don't listen or do their job.

Seek another opinion. Regardless of your ultimate diagnosis, you are welcome here. People who suffer from chronic illness, whatever the label, understand your frustration. This forum is full of wonderful people, many of whom have no diagnosis at all. You are a person who needs support...you are not your diagnosis. If you don't have lupus, but you still need support, feel free to pm me anytime.

Take care,


Jana

kirsten
07-28-2009, 06:17 PM
God bless you all! You are too wonderful.

To answer some questions,

1)I left my last rheumy because every other one of his patients was 70 or older (he had no idea how to deal with a 19 year old's problems) and when I tried to discuss alternatives to prednisone because I was suffering severe depression, nausea and weight gain, he told me simply "I'm trying to save your life here." I had had enough.

2) I gave this rheumy my most recent blood work from urgent care and the hospital and she is waiting on the rest from my old doctor (I'm also getting the original blood work that led to my diagnosis as well as the blood work that determined I was severely anemic and had double stranded DNA (2 of the 4 criteria... who would have thought!)

3) What irks me is that she would make the assumption without this knowledge. If she had an inkling, she should have withheld it until she had actual backing.

Like I said, I thought she was a very lovely doctor, very caring and much more understanding than my last doctor. I'm hoping when she gets the blood work she'll see it differently. Or perhaps she's on to something? I was just upset that she would assume.

Lastly, isn't it possible (or even characteristic) of Lupus to have spans of remission? It's just sooo me to feel my best after waiting 3 months to see a doctor to figure out my problems. haha.

Thank you all so much. This is such a constant struggle. It's so reassuring to hear that many of you have dealt with similar problems. The greatest thing I have learned from these past 2 years is that only YOU can advocate for YOU. I just have to keep fighting until I figure out what's wrong. I am NOT a hypochondriac (it took me almost 2 years to seek help for my lupus symptoms) and I deserve to know what's wrong.



xoxo

-K

Jerzi
07-28-2009, 06:29 PM
I'm sorry to hear that your new rheumy was so abrupt to diagnose you. You think she'd have the sense to wait for your blood work and records from your previous doctor before stating that you don't have a disease you've been getting treated for. Its kinda scary that there are doctors like that out there. My rheumatologist just left town recently and now I'm waiting to get in with a new one (who I already dislike as she keeps cancelling my appointments).

I wish you luck with your doctor, hopefully she either confirms that you don't have lupus, or realizes that you do so you can continue treatment. If not, I wish you luck on finding a new rheumy, this one doesn't sound like the brightest crayon in the box.

Hugs and spoons,
Jerzi

widebody
07-28-2009, 07:07 PM
Kirsten,

First of all, I am SO impressed with how well you express yourself. I'm a communications professional, and believe it's rare to see anyone -- let alone a 19 year old -- write so well. I know this is totally off-topic, but it had to be said.

Secondly, don't stress too much over the (lack of) diagnosis. Sometimes doctors know too much, sometimes they don't know enough, and you have to take that into account and decide for yourself what's best for you.

If you 'click' with this rheumatologist (sorry, I refuse to use the word 'rheumy' :))
on your next visit, once she's seen more of your history, great. If not, move on. And do what's best for you in the meantime.

Good luck, and keep up the great writing!

Brian

jcg196
07-28-2009, 07:16 PM
Hi Kirsten,

Please don't give up and don't think u are crazy. I started having problems when I was 14 it took me until i was 22 years old to find a doctor who understand my symptoms. (I'm now 27) I had been thru many doctors including ones in the military...they tried to tell me it was in my head and that I was a young healthy woman. I didn't give up my search and I finally found my Angel, my Rhuem doctor who dx me with Lupus and other stuff. I am soo sorry you are going thru this pain. It's frustrating and u feel like giving up but don't. Keep searching for a good dr. Don't settle for less. Take care

xoxoxox

neL

mountaindreamer
07-28-2009, 07:38 PM
hi kirsten,

i just can't believe your new dr. made such a definitive statement without all of the facts.

I can tell you from personal experience, she is wrong about her connection with joint stiffness and lupus. I constantly hurt in the areas of my joints, but it is not the actual joint that is affected, it is the connective tissue around the joint. My dr. can squeeze, stretch, and/or move my joints and there is no pain....This did not make her change my diagnosis.

Yes, stretching and wide range of motion causes me pain, but it is not the bones/joints, and this does not rule out lupus.

if you decide to try her again, ask her to spend time explaining her position. Also, as others said, the meds will hopefully reduce your symptoms, so it makes sense that you would not be in a full flare at the time of your appointment.

as you can see, you are totally supported here,,,,,let us help you through this....and do not leave this forum just because this dr. is presently questioning your lupus diagnosis.

abbasgirl
07-28-2009, 10:08 PM
You're here but your dropped jaw that hit the floor is still at the doc's office isn't it? That's happened to a lot of us here. It will more than likely happen again...but I hope against it with all my heart. It takes a while, but the shock wears off. My husband always says the same thing after a bad doc appt..."ANYONE can be a doctor!"

I'm glad you feel better knowing you're not alone. I'm undiagnosed too. My primary is sure it's Lupus and Sjogren's...but the specialists just won't jump on board.

As a rule, I try to give a new doctor more than one shot. Doctors are humans and can have a bad day...but the one you saw acted SO unprofessional... I would be reluctant to give a doctor like that another try.

I've fired three rheumys within one year's time...and one very snooty hematologist. I've also fired a pcp.

Remember...they work for you and they can be replaced. You cannot...so relax from the stress of it, be good to yourself, because there's only one you.

kirsten
07-28-2009, 10:59 PM
What a wonderful compliment! Thank you! I'm a journalism major, so this is a good sign. :)

...and again, thank you for the support and well-wishes, everyone. My mom is very happy I have an outlet like this since she can't be here to support me all the time!


Kirsten,

First of all, I am SO impressed with how well you express yourself. I'm a communications professional, and believe it's rare to see anyone -- let alone a 19 year old -- write so well. I know this is totally off-topic, but it had to be said.

Secondly, don't stress too much over the (lack of) diagnosis. Sometimes doctors know too much, sometimes they don't know enough, and you have to take that into account and decide for yourself what's best for you.

If you 'click' with this rheumatologist (sorry, I refuse to use the word 'rheumy' :))
on your next visit, once she's seen more of your history, great. If not, move on. And do what's best for you in the meantime.

Good luck, and keep up the great writing!

Brian

rob
07-28-2009, 11:03 PM
Hi Kirsten,

I don't know why doctors and rheumos do this to people. They don't seem to understand what trying to "un-diagnose" us does to us. You finally know the cause of your problems, and it really is a relief. You accept the fact you have Lupus, and you learn to deal with it and cope. Then some stupid Dr. comes along and destroys all the hard work we've done in order to accept and live with this disease.

I think this new rheumo is full of it. You can't just do a range of motion test and suddenly call into question a diagnosis that a person has lived with for years. I have pretty good range of motion on my good days, so I guess I don't have Lupus either. Personally, I would not go back to that rheumo.

You mentioned that if you no longer had Lupus that you would not be posting here anymore. As you probably know, I'm a moderator here, and I want you to know that you are absolutely welcome here. Lupus or no Lupus, you are a valued member here and a friend to many. I hope you stay. I'm sorry you've had such an awful day. I hope tomorrow is better for you. Have a good night, and just know that there are people here who understand how hard this is.

Rob

narrowboatnutter
07-29-2009, 05:25 AM
hiya...i dont have lupus, i have some such a rare dx that no one else ever seems to get it, and its not ever menthioned in any internet search or anything....although they do every now and again test me for lupus, just to be sure, but as such its all been negitive....and im welcome on hear...whatever it is, ( and i do think its lupus from what you have said ), we all face very silmar issues, the same feeling, the same struggles and all autoimmune that are systemtaic have many things in common....so please dont leave just because this has happened, you have alot of people who love and care for you here, and with what is going on right now, you need that support and love to see you though!

i hope it gets sorted...im gonna pray for you, and hopefully this new rhemy will get on broad with it all. stay strong, seek othere help on here and one day the light will be at the end of the tunnel...i know it will xxx

leaann
07-29-2009, 06:32 AM
Hi Kirsten,

I know how hard this must be, I have been sick most of my life but only in the last few years have I started to get answers... I am still not dignosed with lupus...But I know it will come and yes I will feel horrible about it but yet releaved about it at the same time...

Give the ruemy time to see the blood work and if you don't agree with her find another one... Let the dr know that the lupus meds you were on helped you... Maybe that will help...

I myself get tired of waiting in limbo but I know I will find and answer one day and so will you...

take care and don't give up... we are here for you even if you you don't have lupus...

SandyR
07-30-2009, 04:52 PM
Kirsten,
Look at it like this. One doc says you are + for Lupus. The other says you are - for Lupus. So together the + and the - cancel eachother out. I agree that you should go for a 3rd opinion. Have you tried finding a new doc through your local LFA chapter? They probably have some teens there who can refer a good doc to you. I found my current rheumy on my insurance company's website. Have you looked there? Call them all up and ask them how much experience they have in dealing with a young adult Lupus population. Tell them that you are specifically looking for a rheumy who has experience with this population. Don't give up and don't leave. I'm not diagnosed yet either. Lupus is being pushed to the side with my docs with the Sarcoidosis stuff but this site is still a 2nd family o me. There are things about being sick that no person can ever understand if they haven't had to deal with the AI fight to survive and God willing, they won't ever have to. Even if it isn't Lupus for me, I think this site is the best place (outside of family and friends) for friendship, love and support.
Sandy

kirsten
07-30-2009, 07:43 PM
Actually, I've had 3 doctors confirm I have Lupus. That's why it's so frustrating. I found this new rheumy through a doctor rating website. She got fantastic ratings. Maybe she's just used to people coming in who think they have Lupus but perhaps don't? Hopefully my blood tests (which consistently fill the 3 blood related Lupus criteria... positive ANA, dsDNA and anemia) will give her a better idea of why I've been diagnosed this way time and time again.

ButterflyRN
07-31-2009, 11:18 AM
Hi Kristen!

I am so sorry you are going through these struggles! I do not think lupus should be dismissed because of good ROM with your joints and no skin symptoms. When I was diagnosed at age 11 (now 30) I did not have joint pain or a skin rash at first. I had other symptoms: swollen lymph nodes, low grade fevers, swollen eyes, then fatigue, weight loss, and swelling that developed in my abdomen and eventually around my heart and lungs. Then of course my positive lab work.

I did not develop joint pain until about 4 years ago. My butterfly rash comes out when I've gotten too much sun! If after you give this rheumy a try and things don't work out then I would say seek another opinion. If she doesn't believe it's lupus then she needs to have another reason why you are having these symptoms. Not all lupus patients have joint pain.

I really hope the best for you and keep us posted on how things are developing. Dismissing your diagnosis is not the right thing to do. I hope it all works out for you! And I hope you are feeling better!