questioning need for rheumy

[daisymay]

I go through this every few months, it seems....

I know I have joint hypermobility syndrome, but I've been told I have sjogrens, too (both dx from same Dr). Some (well, many) of the symptoms overlap. I haven't been under a rheumy's care for years (been treating symptoms--like more salt for low bp). Wondering if a rheumy would give more help, but not so sure. Mostly because I'm seronegative, and figure that another rheumy would discount the sjs dx and just make me more confused (old rheumy has retired)! The biggest thing that makes me think hypermobility syndrome is active too is that I have certain joints that sometimes slip out or pinch nerves. Often wonder if it's all sjs, all hypermobility, or a combo of the two.  Any word on if joint hypermobility is found in sjs? Sigh.....Support please

[quietdynamics]

daisymay.. all good questions and I feel they are ones you can raise you Rheum who knows your medical/symptom history.

I was not familiar at all with Hypermobility (except a friends daughter was born hypermobile  and it was mentioned) I found this article by a Dr. who treat this type of patient.
Joint Hypermobility and Joint Hypermobility Syndrome
Dedicated to my hypermobile patients, from whom I have learned so much. I've seen hypermobility syndrome, but you've lived it.
http://www.dynakids.org/Documents/hypermobility.pdf

[warmwaters]

Not all rheumies would discount your Sjogren's diagnosis.   I think that having hypermobility and Sjogren's are two different problems, which may have related symptoms. 

I guess I'd look at it this way: Do you feel you've fully explored the treatment options for your Sjogren's symptoms, and are getting the maximum treatment that makes sense for you?  If you are doing that, and the doctor(s) who are doing that with you are happy to be doing this care, then maybe you don't need a rheumy. But if you are wondering if something could help your fatigue, dry eyes (or whatever your biggest problems are), then maybe you should see a rheumy to get some input.

[daisymay]

Thanks, guys! Great advice. Quietdynamics, EXCELLENT article. Going to print and highlight the things that are most troublesome and show my Dr. Warmwaters, I agree...I'm guessing the best thing would be to explore some treatments to see what works. That might help find the differences between the two disorders (what works for autoimmune vs what works only for symptoms). Of course, symptomatic treatment alone can be very beneficial!

[irish]

Have you been checked for Ehlers-Danlos syndrome? I think I spelled this right. It has hypermobility plus several other issues that can occur. It can be mild to severe the way I understand it.

Always something with this autoimmune stuff. Hope they can figure it out for you. Good luck. Irish

[daisymay]

I've been checked for that. My problems are relatively mild and there is no *known* marker for the type of ehlers danlos I could have, so the Dr says I may have it/may not. Many drs think hypermobility syndrome and hypermobility ehlers danlos are the same, while many others think they are on a continuum. So like sjs, it's one of those "difficult" diagnoses to get from a Dr.