SS blood tests negative. Lip biopsy negative. Yet i'm left with xerostomia
Posted , 4 users are following.
Hi again all. Hope you are doing ok.
Im really confused at the moment. Just dont know where i stand now. So had the SS A&B tests and the results were very low. So basically negative. Lip biopsy the same. Im a 44 yr old male. Right now having very bad dry mouth. At times the dry mouth pain is just unbareable. Feels like nerve pain and causes a bad headache. Im also having burning feelings now and again, also very painful in the tips of my nasal passages.
I never had any form of paratoid swelling or pain. Had a long bout of stress. Then became more stressed when this happend. Has anyone experience or heard that stress could bring something like this on? Like that it can relate to psychological issues?
Can a person not get this diagnosis ( not that i want it) but still feel all this pain and symptoms? I would have thought something would have come back on my results. Very clearly though i can feel i have much less saliva. Hurts when i speak. Top of my palette gets sore and also my tongue.
I have been on salagen now for over 2 weeks. No help from that yet. Guess that can take a while to kick in. Side effects of that have made me very tired. Just have had some weird side effects. Feeling hot and flushed and weakness. Im hoping these are side effects your body gets used to.
Anyhow ill stop here but look forward to comments. Thank you all and nice weekend.
0 likes, 8 replies
oly._03278 chris39732
Posted
hi chris
Im just getting in and saw this. i had SS tests done that came back negative fir Sjogrens (a rheumy told me you actually dont want a positive one because it can mean it is more severe. Mine didnt show up until i had a lip biopsy performed by my ENT. but it sounds like you may have other possible diagnoses (like burning mouth syndrome maybe?) but then you have nasal issues too. ive had a postnasal drip too and often wonder about that and how it contributes to issues like xerostamia. i am going to be out again tonight but will check my messages periodically. i hope this helps
chris39732 oly._03278
Posted
Hello there Oly. So nice of you to reply to me. Thank you! Yeah i just had the lip biopsy results about 2 weeks ago. Came back negative. Had small small inflamation in some lip cells but was told that we all have some kind of minor inflamation, and or that it was basically like a negative result for the lip biopsy for Sjögrens. I do not have pain inside the nostrils only on the very tips, opening of my nose. From time to time they burn. I put Bepanthane cream on there 2 x daily and it helps. But its often quite red there. From what i understand if you have a dry mouth then the nasal passages are connected to that and so guess some form of nasal dryness then can occur.
From time to time yes i get the burning mouth. Like for example today. Had to suck on icecubes and took some painkiller. Just an awful pain.
I am having extensive blood tests taken at the Antioxidant clinic here to check if this is anything from vitamin deficieny to who knows. Have to wait about 3,5 weeks for results.
Its just weird as im so young. 44. Male. Just keep hearing and seeing that this is for older people.
So the fact that a diagnosis wasent made does make me wonder what the heck this is, if its not Sjögrens. From what i hear its a tricky thing to diagnose. Well its only a name and only we know how we really feel. I suppose at the end of the day doesnt really matter what this is called. Just hoping it will either go away, or my Pilocarpine Salagen will kick in.
One of the worst things has been talking. Boy does my mouth get sore from that. Have a nice evening Oly. =)
oly._03278 chris39732
Posted
hi chris
Im just getting in and saw this. i had SS tests done that came back negative fir Sjogrens (a rheumy told me you actually dont want a positive one because it can mean it is more severe. Mine didnt show up until i had a lip biopsy performed by my ENT. but it sounds like you may have other possible diagnoses (like burning mouth syndrome maybe?) but then you have nasal issues too. ive had a postnasal drip too and often wonder about that and how it contributes to issues like xerostamia. i am going to be out again tonight but will check my messages periodically. i hope this helps
oly._03278 chris39732
Posted
hi chris
Im just getting in and saw this. i had SS tests done that came back negative fir Sjogrens (a rheumy told me you actually dont want a positive one because it can mean it is more severe. Mine didnt show up until i had a lip biopsy performed by my ENT. but it sounds like you may have other possible diagnoses (like burning mouth syndrome maybe?) but then you have nasal issues too. ive had a postnasal drip too and often wonder about that and how it contributes to issues like xerostamia. i am going to be out again tonight but will check my messages periodically. i hope this helps
jj101010 chris39732
Posted
Hi Chris,
I know how you must feel. It took doctors 12 years to figure out I have sjogrens. While it was nice to finally have a name to what was causing all of my symptoms, it doesn't change. No matter if you get diagnosed with it or not, there is no cure. You are just able to treat your symptoms and flare ups. I use ACT dry mouth lozenges when I have to speak a lot and use biotene mouth spray daily. I hope that helps some.
chris39732 jj101010
Posted
Thank you JJ for your reply also. Wow 12 years. Yeah this is a weird kind of deal. Somehow deep in my bones i kind of know what i have. I just sort of know. Somehow just dont think im going to wake up one morning and ill have my saliva back. I use Biotene mouthwash and tooth paste but here in Finland ive not seen Biotene mouth spray. Thanks very much JJ!
amkoffee chris39732
Posted
Google Trigeminal Neuralgia. I don't know much about this condition but I hear it's quite painful.
chris39732 amkoffee
Posted
Thx but might not be what i have. "About 20 people in 100,000 develop it each year. It mainly affects older people, and it usually starts in your 60s or 70s.