30 doctors and who knows how for to go
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Uploader Comments (harleyfanz)
All Comments (5)
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I will pray for you
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It is important for you to manage your disease, because even sjogrens can put you at high risk for many serious conditions, including pulmonary hypertension, which in turn can cause heart failure. I have the name of a top notch rheumatologist (one of the best in the world) who can help diagnose you. Finding a good rheumy (or any doc, for that matter) who thinks out of the box. Let me know if you would like his name and information. He is located in Los Angeles, but is well worth the trip.
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@harleyfanz I have lupus-sjogrens overlap. Blood tests can confirm if you do indeed have sjogrens. There are other autoimmune diseases, such as lupus, that can mimic sjogrens. You had been asking about NSF. I need to ask: do you or have you had thickening of the skin, which is a hallmark of NSF? If so, you more likely have some form of scleraderma. In any case, if it is autoimmune related, getting to a rheumatologist needs to be high on your list.
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The first time I said injections I meant problems. And when I said they are gone now, I meant my other comments.
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What you see in the video is from a previous surgery that went awry. This is not a part of the syndrome.
harleyfanz 2 years ago
I left comments on your video regarding my own injections after 3 injections with gadolinium, but they are gone now. (I thought it was 4 injections originally but I think it was only 3). I also am in sad shape but not as bad as you, thank God. Wish you the best.
tracy10UT 2 years ago
After 10 years of not knowing what I have my self diagnosed myself with having Sjogren's syndrome. An autoimmune disease, textbook symptoms are dry mouth and dry eyes and arthritic like joints. If you are near 40 or older, take a look at the symptoms. A lot of these symptoms are like having NSF. You can get back to me than, and I will try to help you out.
Doug
harleyfanz 2 years ago