Sjogren's Syndrome
Posted , 11 users are following.
Hi,
I am new on here, so I am not sure how this goes... I just came home from my rheumatologist "he's a new doc for me" I was diagnosed approximately 3 years ago as having Sjogren's but also possible other non specified autoimmune diseases. I have all of the symptoms of Sjogren's but also Lupus (Lupus does not show in my tests) I saw a new doctor today & he tells me that he believes that I do not have Sjogren's but Sicca (I looked up Sicca & it says it's Sjogren's) it has shown off & on in my blood work that I do have Sjogren's. I am having a lot of problems, no saliva, no tears, bad skin, problems with all my organs, cataracts (had them for 4yrs, I am 48) the list goes on & on. My doctor is not taking anything seriously, but I am getting sicker & sicker. I'm not sure what to do.... anyone that could give me advice, I would gladly appreciate...
2 likes, 53 replies
SjoDry brenwag68
Posted
Brenwag68,
I would look for a new doctor. You can be seronegative (not positive in your bloodwork) and still have Sjogren's (up to 30%) of folks test negative for SS. In any event it is treated the same. If your current doc won't treat you with Evoxac, Salagen or Plaquenil, find another doc who will treat your symptoms regardless of what the bloodwork says. It is frustrating.
Good Luck!
SjoDry
brenwag68 SjoDry
Posted
Thank you so much... sometimes I feel I'm going crazy... I'm sick all the time. I'm weak, exhausted... I am taking pilocarpine but that is it. I was taking plaquenil but I didn't notice any change so the doctor took me off from it... Today was a new doctor, I never saw him before. I didn't like him from the start... I am having so many problems with my eyes, ears, mouth, nose, I am having problems going to the bathroom, I have pain in my organs & lymph nodes. It just goes on & on. So often I feel like I am dying... just not sure where to find a good doctor... I thank you.
margaret22116 brenwag68
Posted
I too recommend a new specialist. I had to move because they wouldn't take my symptoms seriously. Are you in the uk? Of so what region?
brenwag68 margaret22116
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Mikki1220 brenwag68
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brenwag68 Mikki1220
Posted
Oh thank you... I will definitely give this some thought... I need to do something... I was so depressed when I came home, I thought this time I would get some answers, but all of you & your kind works is really helping me a lot. Thank you
brenwag68
Posted
Oops, words 🙃
margaret22116 brenwag68
Posted
Oh sorry. I know uk better. I know of a very good specialist in Behcet's (which I have....very similar). They usually treat other forms of vasculitis. His name is Dr Yaclzici. He is a rheumatologist. Wonder if he would be good on Sjogten's. But the vasculitis foundation in the US should be able to suggest someone good.
brenwag68 margaret22116
Posted
thank you so much... I would love to travel to the U.K., my husband & I would like to one day... I have family there somewhere 😊
margaret22116 brenwag68
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brenwag68 margaret22116
Posted
No, I wish I did. I have been thinking of going through ancestry com to look up info on my family, when I was young I looked through my families "family tree" (book) & found out that I am a long, long, long off relative of Queen Anne (Stuart) I know my great, great grandfather came from the U.K. to USA by boat, back in the late 1800's. He died long before I was born... I have always been interested in anything that dealt with the U.K. So someday...
Mikki1220 brenwag68
Posted
Greeting, My bloodwork showed Sjogrens high and auto immune pancreatitis. I was just diagnosed last August for Sjogrens and last week for the auto immune pancreatitis. Spent from March to August losing my vision and legs swollen all the time. Finally, the right doctor did the right bloodwork. Weird that your blood work shows on and off with Sjogrens. Makes me question if each blood work test you do, provider requests a Auto Immune panel. If they don't that may be the reason you don't see it and when they do request it, you do. Sicca is another name for Sjrogrens and if the Rheumatologist you just went to today doesn't know that, then he is an idiot. Find someone else asap. We all have alot of the same symptoms and on the same meds but you need to find a better specialist.
brenwag68 Mikki1220
Posted
thank you... I know, I looked up Sicca & it said Sjogren's... it is so frustrating... I also have all the symptoms of Lupus too... I have been diagnosed with Raynauds, Neuropathy, Barrett's esophagus, I have migraines. I get infections all the time, eye problems... it's just never ending... thank you
Tumtum1963 brenwag68
Posted
Sicca is just the name they give for Sjögren's that doesn't show up in your blood work or by lip biopsy. The only advantage I have found for having a confirmed diagnosis now is that my doctors, optician and oral consultant at least know that I have a connective tissue disease and I am on an immuesuppressant now - but many aren't and, to be honest I'm not sure it is doing much as all the upper dryness is flaring and my Raynauds and other stuff is too. There are no real treatments for Sjögren's - just sticking plasters. We need more sufferers to be properly diagnosed in order for more trials and research to be done.
Mikki1220 Tumtum1963
Posted
brenwag68 Tumtum1963
Posted
Thank you... my lip biopsy came back inconclusive because of the severe dryness & amount of scar tissue. The skin inside my mouth peels right off...
Tumtum1963 brenwag68
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Ugh that sounds awful. My sicca isn't that bad - just dry eyes and back of mouth/ throat and nose. But my Raynauds is bad and I was originally misdiagnosed with RA - often have long spells of feeling generally rubbish. My lip biopsy was 100% positive and I'm glad this gives me a formal diagnosis and clarity but not much else.
brenwag68 Tumtum1963
Posted
My raynauds & neuropathy is real bad too... I use a cane to walk most of the time, I am 48 years old (but I'm real small & look much younger) but I feel 100 years old... my left side goes completely numb so I fall down & I have syncope seizures as well...
Tumtum1963 brenwag68
Posted
It sounds to me as if you need to find a neurologist who is good then. Seronegative Sjögren's is more closely linked with neuro symptoms and Vasculitis I'm told on good authority. So a good neurologist may know more than a big standard rheumatologist. I realise the USA is huge but I know that the John Hopkins have very good Sjögren's experts. I live in Scotland so can't help you I'm afraid.
Tumtum1963
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brenwag68 Tumtum1963
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Thank you... I do have a neurologist but he said that I needed the rheumatologist & the rheumatologist said I need a neurologist.. it feels like neither one knows, either what to do or doesn't want to bother so they try to pawn me off on each other. Every time I asked my doctor today, he just said I don't know. So what am I paying him for!?! FRUSTRATING!!! My original doctor sent my labs to John Hopkins, that is where they felt it was Sjogren's, but it does show other unspecified auto diseases...
Tumtum1963 brenwag68
Posted
Could be undifferentiated connective tissue disease (UCTD) if various things have shown up in your blood but nothing specific? I've been where you are - bounced back and forth between rheumatology and neurology. I don't have to pay but services are very stretched here. Not sure where I stand just now as not yet met my new rheumatologist. I had to move around to two more hospitals (relocating for other reasons) to finally get rediagnosed and treated. I always feel it could fall apart badly now having been hospitalised four times in 2015. Hey ho!
brenwag68 Tumtum1963
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tj268 Tumtum1963
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To tumtum-I agree 100%. My rheumy said I didn't have SS but my neuro did right away and I tested positive. Have a ton of symptoms and as I posted earlier develped a posterior nosebleed from SS dryness and needed emergency surgery. My rheumy said all 3 tests were false positives. I don't see him anymore! to brenwag68-Find a new dr and trust your gut.