[miss_gladys]

After a 3 year ordeal, I was diagnosed with SLE last summer. This was my second rheumatologist. She also suspected a possible RA diagnosis too. I began Plaquenil and Mobic along with other meds I take. This regimen has been working (took some time). I still have some small flares here and there but there is a definite difference.

Now, I've had to get a new rheumy because my last one did not take my new insurance. Today was the 2nd time I saw this new guy. I did not get any warm fuzzy's the first time I met him. I figured he would just take over my treatment. All my records were sent to him.

He isn't sure I have anything. He tells me Plaquenil is so "generic" it doesn't really help inflammation but he'll keep me on it because it "seems to work for me". I also take Bactrim because of recurrent infections that my GP and nephrologist think could be Wegener's Disease. The new guy says, "well you can stay on it, it won't hurt anything". Also, he insists having a negative ANA means you couldn't possibly have Lupus. My ANA is mostly negative but I have had a few positives.

Now, this current Rheumy is very far away. Today it seemed he couldn't "suggest" a closer one fast enough. The type of insurance I have he accepts, however, he is with a different hospital which is not included in my plan. Hope that makes sense.

Interestingly, the hospital I go through does not have a Rheumatologist on staff. My GP has no problem giving me referrals. I put a call in and am waiting to hear from him. He's very good about it. I want to let him know about this moron (sorry) and to see if he could at least check out the place he is referring me to.

Anyway, I'm just venting and I've read many posts on this site that many have had to go through several rheumy's before finding the right one. Guess it's just my turn.

I know I'm not crazy and I know what helps and what doesn't. I recently broke out with mouth sores (never had before) and I mentioned this to him but it didn't seem to phase him a bit.

Thanks for listening!

Michelle

 

[LolaLola]

Hello Michelle, Quite right you are not mad and you deserve better treatment.
It is not at all uncommon for the bloods to show nothing much. I have a friend who has had a terrible time with Drs insisting she is "cured" and stopping her meds.

A lot of Rheumatologists do not see many cases of Lupus, and they can make some really silly statements. One told me I could not have Lupus as I wasn't mad enough!!!! When I finally got to the right place it was all diagnosed in no time.
x Lola

 

[lazylegs]

Hi Michelle,

I wonder how much this doctor has actually worked with Lupus. Just because he is a Rheumy doesn't mean he is competent in this area. If he was he would know how beneficial Plaquenil really is for most people. In your situation I would look elsewhere for treatment also. It is very important for you to be able to trust your doctor's judgement.

You should check with your insurance to see if you would be allowed to go to a different hospital since yours does not have the necessary physician. If not then what do they expect you to do?

Take care,
Lazylegs

 

[Katharine]

Hi Michelle,

You're already doing the right thing. Well done!

He clearly knows even less about lupus than most GPs which is quite scary for a rheumy You wouldn't mind so much if they admitted that they didn't know much about it but being condescendiing and bossy around patients is so grrrrrrrrrr!!!

Good luck in finding someone else,

Katharine

 

[CooCoo]

I have mouth sores also. They come adn go and they are not normal. They are part of lupus, but not everybody gets them so some doctors either don't know about them or they think they are cold sores. There is a mouth wash for them if they get real bad for you. I mostly just cut down on acids and use the special over the counter mouth wash for "dry mouth".
Hope this helps some.

CooCoo

Please talk to your dentist or Gp

 

[acard]

Michelle,
A good rheumy who takes insurance is hard to find, but do not give up because this is your health.
A+ANA is not a good indicator of RA or some other auto immune diseases. The fact it is a-ana now could be because of the Plaq. you had a +ana several times before and if dx'd with lupus from one rheumy-well then stick to that and No you are not crazy!!!!

Good Luck,
Becca

ps always go with those first impressions:wink2: