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  • I need finding a rheumatologist, please

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    Old 11-10-2017, 12:54 PM   #1
    HBHMB
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    I need finding a rheumatologist, please

    Hi Community,

    Help, I need to find an interested and engaged rheumatologist to work with me to address the potential diagnosis of autoimmune disease. This rheumatologist would have to agreeable to working via video conference or telephone as I live in Alaska. I welcome any and all recommendations and experiences you may have had with your rheumatologist. I describe my situation in more detail below and thank you all in advance your for time and input; I need and appreciate your support.

    I've been experiencing an array of symptoms for almost 4 years now and have seen a number of doctors. My symptoms seem to be lining-up with an autoimmune condition of unknown etiology.

    I have joint pain (neck, back, right shoulder, right hip, right groin, basal joints of both thumbs), creptius, morning joint stiffness, digestive problems (heart burn, loose stools), all of which come and go, but have been getting progressively worse. Most recently, I have been experiencing eye problems that the ophthalmologist said may be related to an underlying autoimmune condition (or maybe it's just me getting old).

    None of the doctors I have seen will commit to the autoimmune diagnosis (and the potential course of treatment) because all of my blood work is normal (normal inflammatory markers, normal ANA, normal organ function, normal WBCs, negative for HLA-B27), my spine and pelvis MRIs are normal, and I have no family history of autoimmune disease (that I know of). So, I am left in a painful limbo which is getting more difficult to bear despite my efforts to cope through exercise, yoga and meditation.

    My problem is that there are no rheumatologists in the town where I live and the only rheumatology office in my state is not accepting new patients. I did travel to Seattle to be seen by a rheumatologist who ordered an MRI of my SI joints (these were normal), but there was no follow-up consultation to consider other potential diagnoses, and I found the doctor, unsurprisingly, to be overworked and thus unengaged and uninterested in my case.

    If anyone has knows a rheumatologist who might be interested in helping me, or has experience working with a rheumatologist remotely via telephone or video conference, then I would greatly appreciate learning about your experience and recommendations.

    Thank you!

     
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    Old 11-12-2017, 03:49 PM   #2
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    Re: I need finding a rheumatologist, please

    Quote:
    Originally Posted by HBHMB View Post
    Hi Community,

    Help, I need to find an interested and engaged rheumatologist to work with me to address the potential diagnosis of autoimmune disease. This rheumatologist would have to agreeable to working via video conference or telephone as I live in Alaska. I welcome any and all recommendations and experiences you may have had with your rheumatologist. I describe my situation in more detail below and thank you all in advance your for time and input; I need and appreciate your support.

    I've been experiencing an array of symptoms for almost 4 years now and have seen a number of doctors. My symptoms seem to be lining-up with an autoimmune condition of unknown etiology.

    I have joint pain (neck, back, right shoulder, right hip, right groin, basal joints of both thumbs), creptius, morning joint stiffness, digestive problems (heart burn, loose stools), all of which come and go, but have been getting progressively worse. Most recently, I have been experiencing eye problems that the ophthalmologist said may be related to an underlying autoimmune condition (or maybe it's just me getting old).

    None of the doctors I have seen will commit to the autoimmune diagnosis (and the potential course of treatment) because all of my blood work is normal (normal inflammatory markers, normal ANA, normal organ function, normal WBCs, negative for HLA-B27), my spine and pelvis MRIs are normal, and I have no family history of autoimmune disease (that I know of). So, I am left in a painful limbo which is getting more difficult to bear despite my efforts to cope through exercise, yoga and meditation.

    My problem is that there are no rheumatologists in the town where I live and the only rheumatology office in my state is not accepting new patients. I did travel to Seattle to be seen by a rheumatologist who ordered an MRI of my SI joints (these were normal), but there was no follow-up consultation to consider other potential diagnoses, and I found the doctor, unsurprisingly, to be overworked and thus unengaged and uninterested in my case.

    If anyone has knows a rheumatologist who might be interested in helping me, or has experience working with a rheumatologist remotely via telephone or video conference, then I would greatly appreciate learning about your experience and recommendations.

    Thank you!
    Unfortunately the symptoms of autoimmune diseases can precede the labs showing evidence of something by months or years. It took my ANA ten years after my symptoms started to turn positive and then only at a titer of 1:40 which most Drs today would ignore. Based on your symptoms, you need a thorough workup of blood tests, urine tests, xrays, and perhaps a trial of Prednisone treatment to establish whether your symptoms are inflammation based, even though inflammation markers are normal. Mine always are, yet I have both RA, seronegative, and systemic lupus, which finally showed up in labs. You need to ask whatever rheumatology Dr you connect with to check you thoroughly for everything that fits your symptoms, not just the usual screening tests. You might check with Mayo clinic and ask if they have a consultation service for people who are ill, but far away or unable to travel, that involves diagnostic workup, and treatment suggestions for you to follow with a local Dr. There's certainly a need for this kind of medical care and I would pursue getting answers and effective treatment so you can feel better and know what is happening. I certainly understand how frustrating it is to feel unwell and have no answers or help. Please persist and don't give up. Travel may be necessary if you can't find help remotely. Good luck to you.

     
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    Old 11-13-2017, 07:25 AM   #3
    MSNik
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    Re: I need finding a rheumatologist, please

    Are you positive that you cant use a Neurologist? I know there are several listed in Anchorage. Auto Immune is not specific to Rheumy; many symptoms, including those you mentioned of your eyes, can be neurological in nature. MS comes to mind.

    Can you find a Neurologist you can travel to?

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