I have no idea how to handle a serious issue.
Of course everyone (nurses, doctors and there are more) so called nurses and doctors are at seem to think the way you treat sjogrens is the same for every one. Two doctors confirmed what I have always known but have no way. Hubby always goes with me for any appointments
In just about a weeks time I had one doctor who said no one is truly working on sjogren's so if you think a lab is working on autoimmune you will not find the answer. If you think any money you give it is not going for the so called research that is not being done. I would be better just seeing a GP.
Second doctor said I would know when I was going to be losing the so-called try to get help wasn't working as . You just know you are going out(dying) when one of your major organs quit. Of couse no doc is going to tell you any of those things unless you are me and so help. v
I'm having a hard time understanding what you need. It sounds like your drs. aren't listening to you or you need to find a different dr. Have you ever gone to a rhumatologist? That's who you may need to see.
Darn,I thought I had erased the forum note I started. Sorry. I realized is would contain several question so thought it best to do it later when I might be semi intelligent.
right now I would love to get on chat.
I need to know how the heck to find a doctor or nurse that did not just come out of med school! Very, Very short on real help available because once the pandemic eased up the real doctors retired or switched states. Nothing like be an oldie who runs into doctors who have maybe been out of med school 1 to 3 years. These new docs docs really have no idea how to deal with with autoimmune and they do not know how to work with a
we provided the drugs I am allergic to and the doctor wants to use them anyway.
Very frustrated. Remember columbine? We lived a few blocks from the high school. I will try to write again and hopefully make more sense next time.
What I do is google Medical Dr.s in my area and then look closely at the results. It's just a basic way to start out looking for them. Ask around as much as you can. If you do know a trusted dr. you may of had in the past, maybe get hold of him and ask. I wish you the best, and I know it's a pain to find a dr.
I'm not sure why a doctor would tell you that no one is researching Sjogren's. I know of two active studies right now, one by AMIGEN who published in Nov last year, at their Phase 2 trials, and my Rheumatologist told me about a Phase 1 study published in 2022, which had promising results and was moving into Phase 2.
The Sjogren's Foundation reports "There are now thirteen (13) companies with twenty-one (21) potential systemic therapies, specifically for Sjögren's, in clinical trial or getting ready to begin their clinical trial." (quoted from their website) https://sjogrens.org/blog/2023/increase-in-clinical-trials-requires-increase-in-patient-participation