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Living With Sjogren's / Re: Anybody met dr.robert fox ?
« Last post by vrystaat on May 26, 2018, 05:08:22 PM »
I was Dr. Fox's patient in 1993. He is one of the 3 top Rheumatologists in the US.
Unfortunately he missed my diagnosis. His criteria differ from the European Criteria.
Legally speaking, I cannot comment on my interactions with him. Good luck.
Living With Sjogren's / Re: Both arms numb at sleep
« Last post by happylife on May 25, 2018, 08:12:15 PM »
Thanks Elaine
Living With Sjogren's / Re: Both arms numb at sleep
« Last post by Carolina on May 25, 2018, 05:59:11 PM »
This may be related to the way you sleep, the pressure on your neck, etc.

I suggest you talk with the doctor you rely upon most.  Perhaps you need some neurological testing to identify what is going on.

Regards, Elaine

PS  I have this occasionally, but it isn't my entire arm, just lower arms and hands.

I've had lots of tests, but the last was in 2013, so perhaps it is time for another test.   I will discuss this with my orthopedist if I decide to have more testing related to problems with my cervical spine (neck).

Living With Sjogren's / Re: What happened to ChrisR who had a ?cure? in 2016?
« Last post by Carolina on May 25, 2018, 05:52:59 PM »
Living With Sjogren's / Re: Is a rheumatologist necessary?
« Last post by WhatYouSjo on May 25, 2018, 05:18:31 PM »
A rheumatologist is the key doctor assigned to treat Sjogren's Syndrome as a systemic disease. If you want systemic treatments (Plaquenil, methotrexate, biologics, etc.) you will likely need a rheumatologist. In addition, a good rheumatologist should be coordinating with your medical team and taking the lead on your treatment. Unfortunately, many rheumatologists have a poor understanding of SS and are not interested in maintaining contacts with your medical team. In addition, our medical system has moved towards an HMO model that prioritizes efficiency, blood tests, and prescription medications rather than in-depth consultations to understand the specific manifestations of complex diseases like SS.

It sounds like you live in an area that has limited access to medical professionals. My experience has been that small, private clinics usually are able to provide the most personalized service. University research health systems can be good as well, but it really depends on the doctor. HMO systems generally offer the worst experiences.

While a PCP, dentist, and optometrist/ophthalmologist may be sufficient now, you may need more specialized help in the future. I would keep looking; if your SS progresses and you experience more extra-glandular symptoms, you will want a good rheumatologist. In addition, new treatments like Orencia are on the horizon, and will almost certainly require a rheumatologist's prescription, as most PCPs are reluctant to prescribe biologic drugs and other immunosuppressants.
chris please whats the name of your blog? thanks
Living With Sjogren's / Is a rheumatologist necessary?
« Last post by Way2dry on May 25, 2018, 12:03:51 PM »
I just saw my rheumatologist after a year.  Very frustrating.  He never examined me or ordered blood tests.  I guess I used up my 15 minutes by asking questions.  There are few rheumatologists here and the ones I have seen are not interested in Sjogren?s patients.

Is it really necessary to see a rheumatologist?  My symptoms are mostly dryness-related and I am trying the usual treatments.  I also see my primary care Dr. every 6 months.

I appreciate any thoughts on this.

We so understand. I agree with trejonina.  I'm done explaining, and work on finding peace in my life, for me it is thru feeling a part of nature and having faith.
Living With Sjogren's / Re: over active bladder
« Last post by katie1111 on May 25, 2018, 03:10:02 AM »
Thank you everyone for your support and suggestions.

Living With Sjogren's / Re: Increase in Imuran is helping
« Last post by JoannaP79 on May 25, 2018, 02:10:25 AM »
Sjo girl, sorry if I've already asked this bit are you sero neg? Are you on anything else alongside Imuran?
I'm on infliximab for my colitis and ank spond. Rheum suggested also taking cellcept as sjogrens is out of control. I'm concerned about such heavy immune suppression but feel I can't do nothing
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