[wifajax]

I've been seeing the same rheumy since January 2007, and she is honestly driving me bonkers at this point. For the quick version, at one appointment she tells me I have UCTD and at the next it is lupus. Just when I'm feeling comfortable with that, I suddenly am back to UCTD. She has done it to me once again, having backpedaled from lupus today in spite of a positive anti-dsDNA in January 2008, multiple positive ANAs and symptoms galore, including fevers, rashes, mouth sores and joint problems. AAAAUUUUGGGHHH!!!!

I'm going to see my GP, whom I respect greatly. I'm hoping he can get me in to see the one rheumatologist in Jacksonville who specializes in autoimmune diseases. She has an 18-month waiting list, but I hope my GP can pull some strings.

It's just so frustrating to feel as if your rheumy cannot remember you from one visit to the next, and only relies on the top sheet inside your medical jacket to determine what is going on.

Thanks...I needed to vent!

 

[Maia]

That would be very frustrating - & it just makes no sense either with the Jan 2008 results! With any luck your GP will get you into the specialist rheumatologist sooner than 18 months...

 

[Lily]

Oh boy that's a kick in the stomach !!

A while back you said this when she called it Lupus:

she decided Plaq alone isn't keeping the disease under control. I will be starting methotrexate in a couple of weeks. She wants me to start Lyrica and folic acid first. A week later I am to start my new anti-inflammatory, since Mobic no longer seems to be working. Then a week later I start the MTX.

Is that medication regime still in force? If so then I am wondering if she isn't just back peddling for the sake of insurance issues and you having "Lupus" on your file?

Hugs,

Lily

 

[keebler]

(((Terri))))

Sounds like your rhuemy is playing ping pong and using you as the ball.
It would be very frustrating to have a doctor do that.

I hope your GP gets you in soon with the new rhumey. Hang in there.

:flowery:
Lyn

 

[specialk16]

I would be frustrated too sweetie.... Try to keep your head up... I hope that you GP and New Rhuemy will be able to figure this all out for you.... but don't STRESS... I hope you find some answers very soon!

 

[halfpintfl]

Does your GP know about how many times your Rheumy has done this. If not, then I would make sure that he knows and tell him that you are so upset that you just
don't know which end is up anymore. Tell him that you
can't keep going thru this, and could he please, please try to get you an appt with that other Rheumy, so that you can
put this feeling of helplessness and frustration behind you.
Be well and smile.:wink2::worried:

 

[Zoi]

Hey there

I'm sorry to hear your rheumy is going back and forth between UCTD and lupus...A frustrating experience indeed...

I do wonder, however, if you asked her about this? If she has a reason for doing this, it might be good to know! Like Lily said, maybe insurance could be a factor here?

In any case, going to see your GP sounds like a good move! Maybe you could mention what's going on with the rheumy to him and see what he thinks?

Hope you're doing ok,

Zoi

 

[pennylp]

Hi there,

Are you on meds for your symptoms? A lot of times they use the same meds for different diagnosis... Having a Lupus diagnosis sometimes has some bad side affects, like not getting insurance... I think this is why it took so long for me to get diagnosed with lupus, even though my Gp... suspected me of having it...It wasn't until a very severe flare up that he did the tests and they became positive... He was treating me for my symptoms though...
I then went to a rheumatoligist... and confirmed his diagnosis....
I hope you can find out what you have... And that you get on the right meds..... You take care ....

:love2: love Penny

 

[wifajax]

Thank you everyone for the supportive replies.

Yes, Lily, my meds stayed exactly the same this time, even though I am still getting the rashes on my legs that made her start the low dose MTX. I expected she would increase the dose. Nope! When I saw her in April, she said she would order biopsies if the MTX didn't do the trick. That didn't happen,either.

I don't know why she started in on UCTD again. I honestly think she is using the most recent set of labs without looking at the big picture over time. Apparently, the anti-dsDNA was negative in April's blood work. I'm going to order a copy of my entire file from the rheumy's office.

Anyway, I see my GP on Wednesday. At this point I am willing to let him watch over me for 18 months while waiting for the other rheumy. I trust his judgment completely.

Terri

 

[Joandublin]

Hi Terri

Im really sorry you are being messed around by what seems to be quite an incompetent Rheumy. Clearly she is bad for your health if she is not following the progression of your disease. It sounds like you would need to have a tape recorder with you during your consultations

I think its a very wise idea to search out someone else but remember it is no harm to remind them what they had planned to do at your last appointment. Its a fact that doctors do miss things and can forget things from one appointment to the next so if you take notes you can then question why the 'plan' has changed from the previous appointment. For example perhaps you could have asked if she had now changed her mind about the biopsies and if so why? I know its not easy to advocate for oneself in these situations but sometimes we gotta just take a deep breath and ask the questions.

I had a similar experience over a year ago when I asked my Rheumy for a letter in writing stating my diagnosis (I needed it for a mortgage company so that they could officially refuse me protection cover and then I could make the choice as to whether to apply for an insurance waiver). She then said to me that she hadnt diagnosed me with Lupus but was still leaning towards UCTD. I was really taken aback because my GP had already received a letter from her some months previous stating that I was diagnosed with Lupus. She had also told me herself that I had SLE and I was, at the time, taking part in a research study in the Dermatology Department of the same hospital because I had SLE!

Anyway she rambled on more or less talking to herself and musing about how we didnt know enough about these diseases and how at some stage we would learn more about what the specific antibodies meant and that probably lots of peoples diagnosis would be tweaked or changed, etc etc etc. Thats all very well my dear but here I am in limbo land and needing an important letter for my insurance company who dont recognise UCTD and it would have presented me with enormous difficulties trying to sort out my mortgage. I spoke to my GP about it and he poo pooed her ramblings. He had the evidence on file as well as various blood antibody results - anti DS DNA, Anti Ro, ANA, etc.

He advised me to contact one of her Registers (there is a team of 'underlings' under ner). I did that and lo and behold I received a letter stating that I had SLE. So I know how frustrating this kind of thing is Terri.

Let us know how you get on with the other referral. I really hope you dont have to wait 18 months If you end up going back to the other Rheumy, just stiffen your spine and make her answer the awkward questions.

Lots of love and strength to you and I hope you can get some better treatment soon.

Joan:rose:

 

[KarolH]

Jennifer,

How did the GP appt go?

I do think you need another Rheumy doctor as this one is too wishy washy.

There are so many good docs out there it is just a matter of finding one that works with you instead of against you.

Good luck and let us know how the GP appt. went.:wink2:

 

[wifajax]

Hello again!

I saw my GP on Wednesday last week, and he was very sensible about the whole thing. We've discussed my concerns about the rheumy before, but he did NOT want me to be without specialized care for 18 months in the interim. So, he gave me a referral for continuing care with the current rheumy, as well as a second opinion with the other rheumy. (Technically, it will be a third opinion! :lol At the very least, I will have stable treatment until I get the second opinion. Also, he said he would do the biopsies on short notice. He prefers the rash to be active first. Since stress is the trigger, I never quite know when it will show up.

When I came home from work today, I had a message to call the insurance company. They are personally making the appointment with the new rheumy so I get in faster. I'll find out more tomorrow, but it sounds promising.

Joan, I appreciate your words - you always seem to get to the crux of the matter! I don't normally miss an opportunity to speak up, but the rheumy never gave me a chance this time. She was nearly 40 minutes late for my appointment time, and made it obvious she more interested in getting to the next room than to the bottom of my diagnosis.

Terri

 

[keebler]

Hi Terri,

I am so happy that you have such a good GP. He sounds so attentive to your health.

That is so amazing about your insurance, making the appointment so you can get an appointment faster.

Please let us know what you find out tomorrow.
:rose:
Lyn

 

[Joandublin]

Hi Terri

What a wonderful GP! It makes such a difference in our care to have a supportive GP. And thats excellent news about your insurance company

I sure can understand not being able to advocate for yourself given the circumstances of that last appointment Well done though for picking yourself back up again and taking on the fight!

Luv n stuff
Joan:rose: