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Doctors listening


#1

I have been with my rheumatologists since my diagnosis and I’m feeling like he’s just like whatever to anything new that I say to him. I am suffering from depression and anxiety maybe it’s just me.


#2

I’m new here and don’t really have any advice to give. It’s all so overwhelming for me too. I just wanted to say hang in there. You’re not alone with this.

Beth


#3

Thank you I appreciate that!


#4

If you feel that you’re not being heard, then I encourage you to get a second opinion. It’s important that you feel that you are being heard. You also may want to ensure that your doctor is willing and able to speak to your other doctors.


#5

Thank you I think I will do that!


#6

I just changed a bunch of my drs because of this issue of not feeling heard or taken seriously. I honestly believe that had I been heard in the beginning I might have been diagnosed much earlier and might have avoided some of the more serious issues I am dealing with today. That being said, it was still difficult seeking out new doctors because I had the feeling l was being silly or reactionary given the way I had been treated previously. My symptoms were treated as minor and minimized, if not completely ignored. In the end, I still have had to do most of the research and treatment myself but no dr should ever ignore or minimalize a patient’s concerns. Good luck with your search for a great doctor!


#7

Thank you so much for sharing with me!


#8

Nope…changing is important if you aren’t feeling heard. You can’t get proper care if they don’t take it seriously. My eye doc was the one who caught my Sjogren’s but over the years, I have educated him a great deal on how much it effects. He really thought it was nothing but dry eyes and mouth, with maybe some joint aches.


#9

Hi everyone. This is so frustrating. I saw my doctor, who again argued with me that SS is “only dry mouth and dry eyes”. Very dismissive. I’d been having worsening chest pains and she prescribed PPIs, which I’m not impressed with after reading comments on this site. I’ve been told to try it for 2 weeks but I read of how it can cause kidney problems. The thing is, I was prescribed the Omeprazole based simply on my saying I THINK I have acid reflux. This is so frustrating. Is there a non-invasive way of diagnosing acid reflux? I have the pain in the chest and the tightness, as if the food is not going down, and there’s the difficulty swallowing and the feeling like something’s stuck in the throat, but I have little to no burping! What advice is there? My colleague suggested that there is some blockage and frightened me horribly by hinting at cancer.


#10

In my case, due to the dryness, I drink almost an entire liter of water with meals because I need the extra help with swallowing all the way down. Is it possible that is what is happening for you? I don’t really have issues with dry mouth in general but I guess the mouth and throat aren’t ayv100% either.
Frustrating that the doc doesn’t seem to get that this is an autoimmune… which means it affects a lot of things. It’s so important to have someone who is educated on it.


#11

Hi. In fact I don’t know to what extent I have dry mouth because as a runner, I drink lots of water anyway, but I never considered drinking even more to ‘coax’ things along. The problem is that if I do indeed have acid reflux/GERD, I’ve read that it is advisable to NOT drink while eating. Too many Catch 22 situations with having SS along with other or another condition.


#12

Now that is the truth. I have some cross issues too, and its endless juggling. Lol


#13

If you don’t get improvement with treating it as acid reflux, I’m wondering if a swallowing study might be called for, to see how things are functioning. I’m wondering if you’re getting esophageal spasms, or something similar.


#14

Yes, I very much suspect my esophagus is at play here in some way. I suppose I preferred, in a way, acid reflux to that. Will do some more research. Hate the idea of another CT scan/X-ray after just having had an abdominal CT scan. All that radiation!


#15

Oh yes, that really sounds like me, Stoney, but for the regurgitation. I’m going to try some of the treatment suggestions on my own and see what happens. Cheers!