Is it Sjogren's Syndrome? No insurance, what tests can I take to confirm/rule out Sjogren's?
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Hello everyone,
Over the past couple years, Ive noticed my skin has gone from normal to extremely dry. I could go a week without showing (attempted this many times, where I only cleaned the "nasty parts" daily) and with just a warm 10 minute shower; Id be back to extremely dry skin
During that time, I started to have the inability to sweat in many places in my body. Just in the past year, my mouth, nose and eyes have been dry as well. My right eye is so dry in fact, that treatment with lubricating tears, daytime ointments and night time special ointments have not helped. Left is only mildly dry. I also have been dealing with pressure and a little pain in my sinus (right side mostly) and when i went to do a sinus CT; my sinus were "exceptionally clear" yet I had symptons that would make someone think they shouldnt. At least until I did some research and found that dry sinus fits the symptoms Ive been dealing with in that area (specifically cheeks). So What I am suspecting is my sinus may be dry as well. The symptoms fit (although since Im not a doctor, I could be way off here).
I tried a 10 day antibiotic treatment (twice in a row) and that didnt help.What has helped, and has been only a temporary relief; is saline rinses, sprays and gels. The relief I get only lasts for about an hour though. Ive done this treatment for several months now and its been really expensive, and it is only temporary relief.
So what Im suspecting now is that I may have developed an autoimmune issue when it comes to my skin. I forgot to mention that I was diagnosed with graves and it was unable to go into remission so we had to remove my thyroid. I was told that since I have graves (and my family history is that nearly every family member has an autoimmune issue as well) that I may have developed another autoimmune issue. If that is the case, what tests should I take to either confirm or rule this out? My insurance lapsed so my only option is to go to an online lab and order tests myself.
Can anyone help shed some light on this? Am I crazy to suspect the worst case here? I feel like Im jumping to conclusions but I want to know what in the hell is wrong with me and fix it. This issue has been debilitating and I want to get back to a normal life again.
0 likes, 5 replies
chris08587 JamesT123
Posted
Hi James. So sorry you are going through this. I got diagnosed with a positive Ana test and a Sjögrens b blood work test. No lip biopsy, had the Schirmer test,etc. seems like so many of us with Sjögrens have different symptoms. My skin is not dry, but it seems every thing else is. I hope you can get insurance soon. Re: Sjögrens I think it’s significant you have autoimmune disease in your family, but who really knows...my dad had ra and I was certain I had it too, but blood work came back negative. Rather than spend the money on online blood work, I’d get into a rheumatologist. Self pay will be expensive to be sure, but hopefully they can start you on plaquinil or something similar. That really helped me.
JamesT123 chris08587
Posted
Would it be possible to see a rheumatologist without seeing a a PCP for referral? I didnt have a PCP before and was simply going to my endo, who unfortunately left his practice. I want to avoid having to see one doctor for a referral if thats what is needed to see one. Im also hesitant to bring this up to a doctor that i am suspecting another auto immune issue seeing how im not a doctor, and they tend to get offended and/or decide to think youre crazy
at the end of the day, i really dont care if its auto immune or something as simple as a vitamin deficiency.... I just want to be fixed.
chris08587 JamesT123
Posted
I hear you James. I’ve had to do the self pay route before and it wasn’t easy-couldn’t believe some drs wouldn’t take cash! Funny you mention vitamin deficiency. When I was first diagnosed I had high calcium, but low vitamin d and was anemic. Good times. Hopefully you can go straight to a rheumatologist. Just call around. I know, easier said than done, but I’m sure someone will see you. Long wait times though, I had to wait 3 months. Sucked. Please let me know how things work out for you. Prepare to give lots of blood! I think my initial appointment called for over 20 vials. I kid you not. I was just happy the dr was taking me seriously. I see him in about 10 days. I’ve been symptom free for over 3 months🙏
lily65668 chris08587
Posted
Yeah - I too had to give 20+ vials at my most recent blood test last week. Like one of our great British comedians said in his famous blood donor sketch: "That's a whole armful!" But who cares, as long as they can find out what's really going on - or what isn't. I have to say I suspect results will be either negative or inconclusive, like they were the last time I had a full SS workup in 2005. I don't really mind either way - just interested to find out.
Some US doctors won't take cash? It's often a job to persuade Belgian doctors to take anything but cash. But of course I don't believe that they only want cash payments so they can fiddle their taxes. Noooo... not for a moment.
chris08587 JamesT123
Posted