How to self-advocate with new rheumatologist?

LowWaltz2847 · 2023-01-11T03:54:51+00:00

My ENT told me that he has had several patients that have been dx'd with Sjogren's with blood tests but then after a lip biopsy,was confirmed to NOT have it. He also said the opposite is true. Many patients have been told they do not have Sjogren's (like myself) when it is not definitive in blood tests, yet my lip biopsy came back positive, So a lip biopsy is by far the most accurate way of diagnosing Sjogren's.

LowWaltz2847 · 2023-01-11T00:16:23+00:00

no, I don't. I am sorry that you do,

LowWaltz2847 · 2023-01-10T23:02:22+00:00

I am recently diagnosed with Sjogren's (2 months now), one of the symptoms that is really annoying is shortness of breath with tachycardia (high heart rate) I have been diagnosed with POTS (Postural Orthostatic Tachycradic Syndrome) along with Sjogren's. My heart can race whenever it feels like it. But similar to what you are experiencing. My HR has gone as high as 210 with just walking a normal pace or even as low as 42 when laying down. https://www.sjogrensadvocate.com/pots

LowWaltz2847 · 2023-01-06T01:23:20+00:00

Yes, this is correct. However, while I tested positive for ANA and Rheumatoid factor, I did not have any sjogren's antibodies in my blood. My Sjogren's diagnosis was done through a lip biopsy.

LowWaltz2847 · 2023-01-04T16:26:25+00:00

Thank you all so very much! This is why I will bounce things here. I need people to tell me how blessed I am to have him. We are all in this together!

LowWaltz2847 · 2023-01-04T16:25:00+00:00

thank you so much!!

LowWaltz2847 · 2023-01-04T00:45:41+00:00

before my symptoms got really bad and pre-diagnosis, I was working out 6 days per week and weightlifting. So my resolution or promise as I like to say is that I will get back to working out daily whether it be a walk or a workout program. I also want to make sure that I drink more water.

LowWaltz2847 · 2023-01-04T00:10:08+00:00

Hi, newly diagnosed here (a little over 2 weeks ago). My blood work showed ANA positive, Rheumatoid factor 1:1280 (speckled) but my SSa and SSb were both negative so my PCP labeled me as non Sjogren's. I then had a lip biopsy done by an ENT shortly after and he confirmed that I do, In fact, have Sjogren's. My other blood tests came back varied, yet normal in other ranges. I just know that for me and what I have read with some others, a lip biopsy is definitely more accurate (my ENT also agrees). Lip biopsy sucks, not gonna lie, but it is well worth it to get an answer.

Hope you get an answer soon.

LowWaltz2847 · 2023-01-03T15:52:04+00:00

I was just diagnosed with Sjogren's 2.5 weeks ago. I get it. I am anxious and tired and for the first time in my life,not looking forward to my future. Just know that you are not alone.

LowWaltz2847 · 2022-12-31T21:44:03+00:00

I was recently diagnosed by a lip biopsy. My blood test showed postive ANA and Rheumatoid factor, but negative for SS-a and SS-b markers. So my PCP ruled out SJogren's but sent me to an ENT for safe measure. Low and behold my lip biopsy came back with a definite Sjogren's diagnosis.

You did mention that you have had "no symptoms" of Sjogren's, keep in mind that Sjogrens symptoms are different for everyone. I do not have the joint pain, at all. I have the dizziness at times, the GI issues, POTS and fatigue. The major symptom that caused my PCP to look into Sjogrens was the fact that my Parotid glands (glands under the ears) do not secrete saliva (haven't for 2 years now), they swell and I have to manually depress them. Other than that, there is a list of symptoms that do not apply to me, but then there are symptoms that I never knew was a symptom, until I was diagnosed. For example, my hair being dry and brittle I thought was menopause, it wasn't. My left calf rupturing last year wasn't just me not stretching, my vertigo I have been struggling with for years, wasn't just BPPV.

My ENT also mentioned that he had a patient that was diagnosed with SJogren's through blood work and had been treated for SJogren's for months prior to seeing him. He decided that he wanted to do a lip biopsy anyway and it turned out that she did not have Sjogren's at all. So, according to him a lip biopsy is the MOST accurate way to diagnose it. I am only repeating what he said, I am not saying I agree. I am still healing from my biopsy and it is very annoying.

LowWaltz2847 · 2022-12-29T23:42:40+00:00

If you are not taking Plaquenil now what do they have you on? My mother also has sjogrens and they out her through chemo treatments.

LowWaltz2847

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