A rheumy with a new 'take' on sero-negative.

[Scottietottie]

Hi 

About 8 months ago I wrote that I'd started seeing a new rheumy because my neuro wanted me to. He hoped I would be able to be used in a research programme. Well - I'm not a suitable candidate. My lip biopy was negative and my bloodwork is negative also.

With trepidation, I went to see the rhumy last Thursday. I was worried he may just 'sign me off'. He didn't. He said that he still thinks I have Sjogren's symptoms but that without the scientific back-up it can no longer be called Sjogren's but that it would have been a few years ago. He said that he would prefer to call it non autoimmune Sjogren's. He said that medicine simply was a long way from all the answers. with autoimmune Sjogren's there is a defineable cause. He cannot tell me what causes me to have the same symptoms but he says to carry on with the Plaquenil because it was prescribed, with success, for rheumatological conditions before the blood work became so refined.

I mentioned that my blood work was once positive for lupus. (Apparently it isn't any more) He agreed with my previous rheumy that the Plaquenil may be the cause for the change in blood work and that I may have SjS secondary to lupus.

It's all very confusing but at least he's going to keep monitoring and treating me. I liked my previous rheumy but I actually like this one better.

Thanks for listening - Scottie 

[4Kids]

If I have secondary Sjogren's which is not autoimmune, I would be so happy as that gives me hope that it could go away if I treat the primary condition. <3 hope <3

I hope that for you too!

[ohiolady]

Scottie,

You do have Hashimotos, which is an autoimmune condition.  So, can't the Sjogrens be secondary to your autoimmune thyroid?  I have these two together and this is what my rheumy says.

Anna

[Bucky]

Scottie - I'm glad you like your new rheumy - he sounds like a keeper!   

Bucky

[Meld256]

Hi Scottie,

This doc does have an interesting "take" on the whole thing.  And it can all be so confusing...I, too, always have negative bloodwork for anything, and I wouldn't be surprised if I had a lip biopsy that it would be negative, too.

I'm glad you found a rheumy you like and will keep monitoring you and treating you.  Sounds like you hit on a good one! 
Hope you enjoy your weekend!
Melinda

[Katybarstool]

Scottie

I can understand your trepidition at going back, but am so pleased that your rheumy still thinks he can work with you. He sound a very thoughtful doctor.

Kathyx