Hello Jackie!
I live in the Baltimore area so I go to the JohnHopkins Sjogrens clinic. I also take part in their research study. I can only speak about my personal experience. The advantage is they have refered me to some excellent doctors within the system to help with some of the symptoms I have including a Gyn, Opthamologist and ENT for hearing loss. All of theses records are available for all the docs to see. and they are good about sending info to my primary care doc. But when I developed Frozen Shoulder they said it had nothing to do with the sjrogrens so I ended up finding my own Ortho guy.
They have not done anything different than my old Rheumatologist. I still go to my primary care doc for all issues and unless he thinks I need to see the Rheumatologist, I see the Sjogrens Rheumatologist every 6 months. All I can say is that I would have been disappointed if I had come out from Arizona. But if I didn't have a good rheumy or primary care doc, I might feel differently. I am on plaguenil, fish oil, chondroitin, aleve, zantac, restasis, pilocarpine. I have fatigue, sore joints/muscles,weekness, inability to concentrate, short term memory
issues, gastritis, hearing loss, heat/cold intolerance, dry eyes/mouth and I keep breaking teeth.
Sjogrens is so frustrating because they can't do anything about so much! I hope this helps.

University of Pennsylvania hospital also has a Sjogren's Center. That's where I go. My rheum. is great. Every one she has refered me to has been wonderful.

sueb88.

I find it interesting that they told you frozen shoulder has nothing to do with Sjogrens. I am also dealing with a frozen shoulder and the ortho and pt both said and I have also read that more women than men are prone to it and also diabetics and AI people are more prone to it also. Just wanted to let you know that.

sueb88

Thanks for the imput, I am wondering if it would be beneficial at all since I really do have good doctors. I just thought maybe a new set of eyes that focus mainly on sjogren's would be good. I really wish there was something on the West side of the US, everything seems to be on the East Coast....

I would be interested in hearing more about the research aspects. My PCP was interested in what the researchers could do for me more than anything.

My rheumatologist says I am his most complicated sjogren's patient because I have experienced alot of organ involvement. Mainly affecting the kidneys which limits alot of the regular treatments. I am on plaquinil but can't take any anti-inflamatories of any kind due to the low kidney function. I also have cardiac issues, nodules in my lungs, on my thyroid, neuropthy, severe fatigue, migraines, hypokalemia, RTA, joint pain and weekness, CNS problems, concentration/memory issues...you name it and it's hit me.

Again, thank you

Well Wishes
Jackie

Hi Sueb88, I am a new member and just diag with Sjogren's a few wks ago although I truly believe I have had it since childhood. I have been shuffled around the HMO sys for decades. So many things really stuck out to me in your post. The hearing loss, broken teeth, sore joints/muscles,inability to concentrate, short term memory, etc. But let me tell the frozen shoulder as well, I could not even stay in the MRI tunnel long enough to finish the exam the pain was so seveve from frozen shoulder but it comes and goes. I am also a survivor of a ruptured brain aneurysm that the neuro just told me may have been caused by Sjogren's. I feel so lost...this is a huge mystery to untackle as I think my Mom who died when I was 8 yrs old may have had it as well. I have only been given pilocarpine so far but had an adverse reaction to it and I'm already on other meds for pain. I really don't know where to go from here as my med group does not have a Rheumatologist that specializes in Sjogren's or even a dept head that I could talk to.

The National Institutes of Health in Bethesda, MD also has a Sjogrens Syndrome clinic. I went throught their 2 day program in 2008 when I was first diagnosed. They are still accepting first time patients and the best part is that it's all FREE!

If you Google the website you will find all sorts of helpful information on their program and how to enroll.

Also if you haven't already done so, be sure to get plugged into the Sjogrens Syndrome Foundation in Bethesda, MD as well: www.sjogrens.org.

I know it's tough. I have many debilitating symptoms and chronic illnessed too. Don't be discouraged. There is help and hope for us all.

Faith

Faith , what have they done for you specifically. What area's have you improved on and why?

I wasn't aware that there was a free program.....I know they have the 2-day program but they wanted my insurance info.

just reading everyone;s symptoms help me not feel like i am crazy....or alone