Hi. My Dr is sneding me to JH to see the doc at their clinic that is both a Rheumatologist and a neurologist. Has anyone else been to their clinic? Any advice on how they do things there?
Is his specialty Rheum or Neurology? Is there a special clinic for Sjogrens or just in Rheum?
I wish I lived close enough to go… keep us informed about how it goes
I was not impressed. PM with questions as I do not want to post my views on so public a board.
I’m sorry it didn’t go well. Thanks for offering to speak to members privately about this. Is our policy that we don’t allow negative reviews on the forums.
Maureen said:
I was not impressed. PM with questions as I do not want to post my views on so public a board.
I would love to know if they can help!! Though diagnosed with multiple immune disorders, I think the Sjogrens it’s my main problem.
I have read to make a list of questions and take with you too make sure you remember…also take notes.
Read to ask questions about any meds prescribed, I.e., how long will have to take, possible side effects our interactions with other meds or supplements you may be taking.
Good luck and please keep me posted! I need something diff…
Ginger he is a specialist in both! It is a clinic specificly for Sjogrens. They have done extensive research on the Neurological aspects of Sjogrens and that is why I am going there. I live in cleveland so its going to be rerally tough for me to travel there with all of my pain but my Dr knows the Neuro/Rhuem doc well and really wants me to go. The doc has all of my records already and my Dr is going to direct all the logistics. I do have questions for you Maureen…i just friended you. Thats how you PM right? Thanks AUjewel! Ill be ready with the info and Q’s. Will keep u all informed! :)) amy
Please let us know how it goes. I am about 2 hrs from there and if they really know their stuff I may give them a try. Hope you get some answers and relief.
Hi runrx,
About Johns Hopkins Sjogrens clinic, I had a Neuro at JHH who was awesome but he passed away a few years ago. But he had sent me to an ophthalmologist as well as a rheumatologist there because he suspected Sjogrens. Unfortunately I could not be definitively diagnosed with Sjogrens because my lip biopsy did not show enough infiltrate. I never was officially at the Sjogrens clinic per say , yet had and still have an excellent ophthalmologist from Hopkins who is part of the Sjogrens team. She is through, smart and caring. The rheum I saw from the group was good however I did not care care for the Fellow working with him but she has since finished her fellowship and left Hopkins. But by the time she left I had already switched to a new rheumatologist at University of Pennsylvania. I have met the Dr.in charge of the Sjogrens Center while I was doing an international SICCA study he was doing at JHH. Dr. B. was sincerely nice, took his position seriously, was attentive to my questions and explained anything I asked. So overall I was pleased with Hopkins, I was diagnosed with SICCA syndrome (since I did not meet the lip biopsy guideline) but am treated by every physician as having Sjogrens since all other components are present. Also psoriatic arthritis and a variety of other autoimmune processes have been diagnosed by doctors there. One of the reasons I like Hopkins is they work together, never have left me hanging and have been great referring me to other physicians. Currently I have two ophthalmologists, a gastroenterologist and an ENT there. I drive almost three hours to get there and do so without any hesitation, I feel I receive great care there and would recommend them without any hesitation. They have an easy registration process, a patient portal online that you can access you recorde, test results, etc. I have to admit the waiting room time,depending on the day/doctor,can be long so bring something to do! As an RN, I am particular about physicians and excluding the one mentioned above, I have found them to be down to earth and truly concerned about my medical problems. Having had three surgeries and many procedures and PT at Hopkins, I feel I know pretty much how they work. Let me know if you have any questions. I think you will be pleased by your experience there. Good Luck!
You talked about your pain. May I ask where it is? I have a lot of pain in my hips and lower back. I feel like it is creeping up higher into my shoulder blades. Sometimes it makes it hard to breathe. I bruise so easily now. My pain medication is now just taking the edge off. Any advice would be appreciated.
Although I know we are all corresponding in English there are a couple of initials that crop up and I don't know what they mean.
PM - Maureen and Runrx used it
PT - Babs used it.
Thanks a lot. I wish we had a John Hopkins Clinic here in Holland. Gina
Sorry Gina, PT is physical therapy!
I go to Johns Hopkins at least annually and I live in Arkansas. I already knew I had Sjogren's the first time I went due to high SSAs, etc, but my doctors here wanted me to go to the Sjogren's Clinic to see Dr. Alan Baer and the rest of the Sjogren's team to discuss treatments. Not only was he helpful for the Sjogren's and Raynauds, but he put the pieces of the puzzle together and knew by looking at my records and then examining me that I had Ehlers Danlos. My doctors here sent me to Cleveland Clinic and I loved them, but Dr. Baer is the first doctor that knew what was wrong besides the autoimmune diseases. I have major gastrointestinal issues and will be going back for the first week in Sept. to do the Comprehensive Gastro Transit Protocol that only JH and Temple University can do. My neurogastrointestinal doctor there is Dr. Dhalli. I just came back from the Ehlers Danlos Clinic and saw Dr. Hal Dietz. JH has been amazing for me. Because I am coming from so far away, they coordinate my appointments for me. I quit teaching due to health issues and I am single so I don't have a lot of money, but it is worth pinching pennies to be seen by the best. When I was at the Sjogren's Clinic one day, a lady was really upset with docs because Dr. Baer and the team couldn't confirm her diagnosis. It's not the doctor's fault if the patient doesn't meet the criteria for a diagnosis. It is costly for me to fly and to find a place to stay and inconvenient, but going to JH is worth it!
Pebbles I have to agree with you, Hopkins gets things moving in the right direction. They are efficient, caring and show the ultimate professinalism at the same time. Happy to hear they have helped you and yes they are worth the long journey.
So glad you shared this with us. I too have Sjogrens and Hypermobility Syndrome as in EDS.
So glad you got your diagnosis early because I’m near 70 and the geneticist I saw can’t confirm the Ehlers because of my age although she did confirm that the EDS is probable. Somewhere in the literature I once read that having Sjogrens is a symptom of EDS . I’ve not found anything on the web to confirm this. You might ask your drs at JH if this is true and share the answer here. Both conditions are genetic in nature and the future may hold the real answer. Please stay in touch with me as you are the only other person I know that has the dual diagnosis . Thanks so much!
wow you guys are super helpful!! I have a long day of therapy so i will respond later tonight!
thank you again!!! Amy
Where is the clinic? Do you have tip have a referral?
Ginger said:
So glad you shared this with us. I too have Sjogrens and Hypermobility Syndrome as in EDS.
So glad you got your diagnosis early because I'm near 70 and the geneticist I saw can't confirm the Ehlers because of my age although she did confirm that the EDS is probable. Somewhere in the literature I once read that having Sjogrens is a symptom of EDS . I've not found anything on the web to confirm this. You might ask your drs at JH if this is true and share the answer here. Both conditions are genetic in nature and the future may hold the real answer. Please stay in touch with me as you are the only other person I know that has the dual diagnosis . Thanks so much!
The Clinic is in Baltimore at Johns Hopkins. I'm not sure how the referral works. I sent my medical paperwork to the Sjogren's Clinic and Dr. Baer wanted to see me. Johns Hopkins handled everything for me. Once you are accepted in the clinic they set up all the other appt. with opthamologist, ENT, Gastroenterologist (Don't let them schedule you with Carolyn Bacal), neurologist, etc. It is a busy 2 or 3 days, but you see everybody you need to see.
AUjewel said:
Where is the clinic? Do you have tip have a referral?
I've been to the Sjogren's Clinic and the Ehlers Danlos Clinic and I have a neurogastroenterologist there. At the Sjogren's Clinic they set up everything for you so that you will be scheduled to see the team of doctors....including Rheumatologist, Neurologist, Opthamologist, ENT..everybody you need to see.