[Karen B]

help! I don't know what to do.

I saw a rhumatologist on 3/3 and was feeling pretty well that day and she was dismissive about past symptoms, saying "anyone can come in here and tell me about symptoms..." ($%#@!!) so she checked me for vitiman D dificiancy, found me deficient and prescribed vit d - no treatment beyond that.

Now everyday since then has been a new little symptom, mostly new joint pain, also mouth sores and a small scally rash, anyway nothing I couldn't tolerate UNTIL omg this weekend when my knees flared up with the most god-awful pain - seriously - I couldn't move. Today they are recovered and only slightly painful.

So this rumy won't treat me if I don't exhibit symptoms during a visit - I think -
what should I do? I can't tolerate that kind of pain, is there any OTC drug that has helped you guys? Should I just go back to the rumy and plead?

what was it like for you in the begining?
I'm pretty scared too -

 

[Barb G]

"anyone can come in here and tell me about symptoms..."

Hi Karen,

I think that must be the new response someone has recommended rheumatologists use because it is, word for word, exactly the same response I got from my rheumatologist on March 6th! Unless we have the same rheumatologist, which would be more reassuring than the possibility some consultant is telling them what to say in response to symptom complaints.
But you have been diagnosed with lupus, right? I'm still waiting for a correct diagnosis, whatever that is, so I don't understand that response to your symptom complaints at all.

When my rheumatologist said that to me on March 6th, I reminded him of symptoms, dates or time frames, treatment for symptoms provided by other physicians because I didn't know the symptoms were relevant to my rheumatological issues, etc. I then told him I would be bringing in photos or video of my symptoms from now on and that at my next visit I was going to bring in documentation of my symptoms and the treatment recieved, that I have provided him previously, but restated per lupus ACR criteria. That got his attention and he took me much more seriously although I have yet to see whether or not I will get a correct diagnosis. I suggest you do the same.

I just don't understand why someone becomes a physician if all they then do is try to find reasons not to treat someone. I was a child welfare social worker for a long while and social workers do the same thing. I got so frustrated by their chosen inertia which they justified by discrediting their clients that I had to quit.

Barb

 

[Karen B]

Hi Barb -
No dx yet - I'm like you. She said, can't say if you do have lupus or if you do not - come back in 3-6 months. But - I called this morning and they are working me in at noon. That is very nice. I'm just going to spell it out for her and stay in her face.

It's rediculous - why, dear lord, why would anyone come in there and exgaggerate symptoms? I'm 48 yo - I don't want over treatment! Believe me I would rather not ever see her or any of her kind again. I wish the whole business would go away!

What I do have is a low positive ANA and a positve dsDNA, and these symptoms that I've already listed.

good idea to document and photgraph - in this case my knees look normal. Feel like they won't support me. Very painful. I got a very small rash on my upper lip two weeks ago, and I thought, HA! I'm going to photgraph that! But it didn't do anything, it was the size of a pea for three days, itcy and scally then went away! So take pictures even if it is small, you can take another if it gets bigger then only show the worse one. I wish I'd done that. I assumed it would get bigger -

Well, see what happens today.

take care Barb -

I'll say "hi" to "our" Rhumy for you :wink2:

 

[jovie]

Nobody will listen!

Hello Karen,
My 17 year old daughter (18 in September) has just been diagnosed. She first had symptoms at the age of 10 when she hit puberty. We have lost count of the number of doctors visits, 'specialist' appointments and hours in A&E! I knew and she knew at least 4 years ago what it was all about but no-one seemed to want to listen. She has been treated for Migraines/Stress with beta blockers had Mefenamic acid for bad period pain had multitudes of blood test, scans. I carried her into the doctors surgery 1 day because she literally could not walk because of pain in her knees and was told 'You have a nasty virus'. On another occasion she was making pasta for her tea and accidentally lay the palm of her hand on a very hot hob. She felt no pain and only noticed it was on as it was glowing red! An hour later the pain and a blister kicked in. The doctor calmly told us it was Reynaulds Syndrom and due to the change in weather! Still they made no connection. There was just nothing 'visible' for them to be able to say ' yes you have Lupus' until 1 day just before Christmas she got up with 2 big fat lumps on the back of her wrist.
She was referred to a rheumatologist and he began treatment immediately.
Dont give up, never give up until you make them listen!
Sorry if ive gone on a bit but we've been there. I feel for you.
Take care.
:sad:

 

[Karen B]

Oh, Jovie - hope she is feeling better.

I would rather go through it myself than see my daughter go through it.

 

[Joandublin]

Hi Karen

Im really glad you telephoned and got a quick appointment. Your Rheumatologist is a disgrace If she doesnt believe you she would be better served coming out straight and saying so - then you can go and find someone who will.

Actually maybe you should ask her directly if she believes you are making up symptoms if she comes out with another quip like that There's nothing like confronting them straight up and 'naming' what they are insinuating... Let her make her position very clear to you rather than make you feel like an idiot

Im very surprised that you havent been started on any treatment particularly with your dsdna antibodies. Has she ever been able to explain why you have tested positive for these? Im sure you know they are quite specific to SLE. If you dont get much joy from her real soon I would look into trying to get someone else to get another opinion.

Also welcome Jovie

You might like to post your own introduction thread on the Introduce Yourself Forum? I wouldnt want you to 'get lost' amongst someone else's thread. Sorry to hear about the journey your daughter has gone through to get a diagnosis :sad: I hope her treatment is helping her.

Take good care
Joan:rose:

 

[x_claire_x]

I agree, if this rheumy is not able to help she should be professional enough to say so, at least then you can search for a more helpful rheumy preferably with auto immune experience.... you have every right to be heard... go you!
Claire X

 

[ATS]

i can't believe the nerve of some of these doctors. i am so sorry anyone has to go through this. i remember doctors telling my parents over and over again that i must have been faking an illness because there was nothing wrong with me! to this day i am still sensitive and paranoid about people not believing i am sick. hugs to everyone that has to go through this.
my advice: if your doctor doesn't hear you, get a new one. that doesn't mean if your doctor doesn't alway AGREE with you, get a new one (sometimes doctors know more than us, or vice versa! so there can be disagreements), but if they make you feel worse than lupus does, get rid of em!

 

[Karen B]

well that didn't go well at all. Like I said my knees arn't swollen and she just said they look fine to her - she recommended PT - said I must have strained them.

I called her out on it and she resented it - said maybe I should get a second oppinion (in other words she doesn't want to deal with me) - I said it seems so odd that all of these things are happening now - I know my body and it is really wierd and unusual. She said, well, you are aging.

I told her I thought she had been dismissive in our first meeting and I felt she implied I was lying about my symptoms. She said "we have documented proof that people lie" - not, 'OH, no I didn't mean to imply that' or... or... shesh! any one of other things she could have said. Basically she didn't deny calling me a lier.

but dispite her bad attitude and terrible bedside manner, maybe she's right - maybe I'm just complaining too much and making a big deal out of nothing. Wasting everyone's time.

Sorry to waste your time too.

 

[spellbinder]

hi karen,
i'm so so sorry that you have to go thru this. and you are NOT wasting our time. i would ask for my records and go and find a doctor that will listen to you. we all have gone thru many many doctors and years (not to scare you) until we found someone to listen to us, my personal experience was nearly 20yrs, i had the flu for nearly 20yrs...

don't give up keep on pushing and keeping your list. maybe bring someone else with you, it couldn't hurt. you'll find someone who will listen. believe it or not there are good doctors out there.

take care and good luck
hugs and kisses

 

[Barb G]

Karen, you have numerous symptoms that can't possibly be due to aging.

I don't think your rheumatologist knows much about lupus. How difficult would it be for you to get a second opinion from a lupus specialist? If it's possible for you to do, then do it. If not, then document your symptoms via photographs, witnesses, other physicians, etc.

Don't let her get you down!

Barb

 

[Lily]

Hi Karen,

Kick her to the curb and find someone who knows what they are talking about. The fact you have a positive ANA AND dsDNA is pretty hard to explain away with ageing at 48 I'm pretty disgusted in her really.

I would contact your local lupus association and ask them who is good, I would also ask on our Find A Doctor Forum here for recommendations from members who might live near you. Then I would get copies of your blood results (esp those pos ANA & DsDNA) and go and see someone else.

Hugs to you and no you aren't losing it, but the doc lost it long ago by the sound of it :hugbetter: Push on, most of us have met some docs in our past like the one you currently have.

love
Lily

 

[lazylegs]

Hi Karen,

There are documented cases of people lying just to get their hands on pain medications. You however have two positive blood factors along with joint pain. Just because the joints aren't visibly swollen doesn't mean you aren't having pain. She wasted your time, not the other way around.

You should definitely get a second opinion. The bedside manner of this doctor is atrocious. Even if this doctor did eventually diagnose you, you would never feel comfortable with her.

Take care,
Lazylegs

 

[KarolH]

Hi Karen,

First and foremost, you did not waste her time, she wasted YOUR time. I am appalled at the way she has treated you and I would never go back to this woman again.

You are not wasting our time at all. A positive ANA coupled with a positive dsDNA is really pretty specific for Lupus. I think you need to find a good Rheumatologist that is very knowledgeable of Lupus so that you can get a diagnosis and get on some treatment.

Maybe your pcp can recommend one to you??? I do hope you stay here with us. This board is my home away from home and the knowledge and support I have reiceved from the people here is just unbelieveable.

Hold your head up high and do not doubt yourself. You know your body better then anyone with MD at the end of the name. Press forward and get the help you deserve.

Let us know how you get along moving forward. Good luck and come join us in the chat room sometime.

 

[greenhaggis]

Karen,

I agree that you should find another specialist!

When I was diagnosed it was based upon ANA 1:640 and Anti Ds-dna's being postive along with many of those symptoms you also have.

I am also one of those people that don't have Kidney issues (despite the positive ds dna), or any other major organ involvement.

I had similar problem with my first Rhuemi, so in end I wrote a letter to the PCT complaining about him, his treatment (or lack of), gave them the whole list of my health issues, bloods and family history - they in turn agreed for me to see another person. This new referral led to my diagnoses being confirmed!

Don't give up, I nearly did and that in itself would have been monumentally bad for my health.

Fight, fight, fight!!!!!!!!!!!!!

In your country, you can actually choose who you see!

 

[orangelily]

Hi Karen, You did not waste her time she has wasted yours, I went through the same thing and eventually had a stand off in the consultation I was then seen by the Head of Department and would you believe it they actually took me seriously. I also wrote to the Health Authority and the Department at the Hospital, to tell you the truth I didn't care what happened to the Ruemy I was at the end of my tether. My GP is fantastic and it does help that she has made a great effort to find out more about Lupus.
Hugs and Kisses to you and keep smiling x
Orangelilyx

 

[Joandublin]

Hi Karen

Im fairly gob-smacked here What a cretin you have encountered Her manner is absolutely appalling in my opinion. I dont know how you could ever trust her judgement or opinion after this It sounds like she is not good for your health.

Karen, I dont blame you for feeling down but take a day or two to catch your breath and lick your wounds. We all feel very vulnerable when it comes to our health. Its one of the hardest areas of our lives to advocate for so you are not alone. When you have re-grouped, push forward and do all you can to find yourself a doctor you can talk to who wont be rude, obnoxious and arrogant with you.

Dont let this woman put you down. Stiffen your spine for the battle ahead and seek out another Rheumatologist. This woman has as much as called you a liar and in my book I dont ever see how she could come back from that one You have enough problems without having toxic people like her in your life.

Hang in there Karen. Talk to your PCP about what happened and take it from there. As Lily says, get copies of all your relevant blood results.

Much love and strength for the fight
Joan:rose:

 

[elle-co]

Hi Karen,

Sorry to hear you are going through so much crap to get answers. Your rummy sounds exactky like my first one. He was arrogernt, rude and compleatly useless. Like yours he was only interested in what was wrong that day On my first appointment he told me he would run some tests but he didn't think there was anything wrong with me. when I saw him the second time my ana level was really high, his responce....... well you might have an extreamly mild form of lupus, take 3 sleeping tablets a night and stop taking the 10mg of steriods (no tapering down)
Not good!!! I asked my dr if I could switch and my new rummy has been wonderful.
Your rummy gets paid to see you. You are not putting her out, she is wasting your time. Is it possible for you to ask to see a different one. If so don't waste your time on a rummy who has the social skills of a gnat.

Take care
Elle x

 

[LolaLola]

Dear Karen, Hello and first of all please don't stop posting. This site helps many people who are struggling for a proper diagnosis.

You may not realise but since this Rheumy is so keen on "documented facts" it is also a documented fact that joints,like your knees, do not necessarily swell or look red in Lupus. There are many here who could tell you that from personal experience. I have no doubt your knees really hurt. Sometimes, not very often now I am on good treatment , I want to scream when it hurts. Last time I was only buttering a piece of bread!

You need a good Consultant. I am not sure if you are in the UK , US or somewhere else. Many of us have had to get rid of useless Docs. You get used to it.

This is a hard time for you but there are some Docs. out there who will listen.
x Lola

 

[x_claire_x]

Hi Karen, there are times when it would be nice if we could morph ourselves into the Consultants body and they into ours for a week! You would be the better Consultant and she would be the worse patient!!!!:rotfl: What an idiot she is, obviously knows nothing about lupus or you.... time for a change I think. Don't let her get you down, she is not inside your skin and she is not the Rheumy for you...when you are ready push on with this and believe and trust in yourself... all the best.
Claire X