When you say team of docs you mean u c them individual then do they all confer or just treat individually. I just saw spine dr today at Baylor College of Med here in Houston but they have no Sjogrens clinic per say all my records are in computer system there. I had xrays today and dr wants MRI of lower spine before doing injections. He told me that auto immune diseases like Sjogrens cause a great deal of spinal problems and I appear to be slightly hump back in the upper spine from autoimmune disease. This dr is Darrell Hanson, and is head of the scoliosis orthopedics at Baylor Col of Med Houston. I really like him a lot and know he will get to the bottom of my issues. He’s also pediatrics for spine and scoliosis at Texas Children’s Hospital. I have really enjoyed Baylor because all the docs have your records at their fingertips. It’s been 6 mos since I started seeing these docs and has taken this long to see everyone I needed to see. I’m so lucky to live in a city with the best med center in fhe world. I’m going to investigate further to see if university of Texas health science, also a teaching hospital has an Ehlers or Sjogrens clinic. It’s my understanding that any Rheum can treat Sjogrens. But it would be nice to see someone that deals only with Sjogrens and understands Ehlers as well.
Could you also explain the need for a neurogastro or a neurologist? I’m wondering if I should see neuro for Reynauds. What can be done for it if you do have it !
Ginger My pain started in my right hip and then moved to my low back and then right neck/shoulder and now left neck/shoulder. In my case i am told that it is part of a CNS complication of sjgrens. DYstonia for sure and some other nerve stuff that will need to be sorted out at JH.
Gina said:
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
Oh ya…for pain I am taking Low dose Natrexone instaed of pain meds. It works for me…its not perfect and im still in a lot of pain but i like it better than the other options since its none adictive.
ginger said:
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.
Thank you that makes me feel better about going. iTs going to be a tough trip for me I know. I am hopeing they can diagnose some of the other things going on with me besides Sjogrens. Or maybe its ALL Sjogrens.???
babs53 said:
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!
A couple of decades ago, give or take, I went to them. They were the ones that finally put the pieces together and figured out that I had an autoimmune disease. I saw Dr. Ratain, and a host of others, but that was a long time ago. MOST of the doctors I saw were very professional and kind, but there were a couple of doctors who probably needed a vacation or a change of job. Thankfully, they were not my main ones. I will always be grateful to JH for their care of me.
I sure hope they can put the pieces togther for me…and maybe get me some treatment!
Sorry Gina! PM means private message as in PM me.
Gina said:
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
My primary care physician is in the Johns Hopkins Community Physicians group, so she referred me to JH specialists in rheumatology and opthamology who were excellent. They all communicate and are informed via shared electronic patient records. Last week I suffered from an eye lesion of some sort. Over the weekend it intensified despite having been seen and meds prescribed on Friday. I called & was immediately connected to the opthamologust on call, who pulled up my records from the previous day and opened the Baltimore office of the Wilmer Eye Institute just for me. It’s almost a 2 hour drive from my home but definitely worth the trip. Over all I am impressed by the standard of care, but again, all of my doctors are JH doctors because of the having chosen the JH Community Physicians.
Wow thats great to know! So far they have been very difficult to work with since they are not returning my calls but I wont judge them before i even see a doctor! thank you for the encpuragement! I think i will be going there in Oct from what Ive heard so far.
Xochitl said:
My primary care physician is in the Johns Hopkins Community Physicians group, so she referred me to JH specialists in rheumatology and opthamology who were excellent. They all communicate and are informed via shared electronic patient records. Last week I suffered from an eye lesion of some sort. Over the weekend it intensified despite having been seen and meds prescribed on Friday. I called & was immediately connected to the opthamologust on call, who pulled up my records from the previous day and opened the Baltimore office of the Wilmer Eye Institute just for me. It’s almost a 2 hour drive from my home but definitely worth the trip. Over all I am impressed by the standard of care, but again, all of my doctors are JH doctors because of the having chosen the JH Community Physicians.
I visited the Sjogrens Center at JH last month and couldn’t be more pleased. They were very thorough and professional. My primary issue is neuropathy in my feet, legs, hands and face. I’m still waiting for the results of a skin punch biopsy of my leg to investigate the neuropathy. Also this test can indicate whether the autonomic nervous system is implicated. I’m going back to JH in August, even though its about 4 hours away. I think its worth it to see the best doctors for this disease.