Hi all I've just receive a letter from my Rheumy with results from my minor salivary gland biopsy. It simply writes to my doctor results showed features consisteqnt with Sjogren's syndrome I will be discussing the findings with her whenwe see her in clinic.
Does this mean I may have a diagnoses or after 5 years of pushing for answers and been told it is fibromyalgia. Hooe someone can help my appointment isn't until 12th March. I'm so mixed up. Thank you
I sure hope so 🙏👍
I mean I hope you get some answers of course not that good it’s sjorgens 🙈 but fibro seems answer for everything I’m still searching so here’s hoping you get some answers 👍
Apologies I should have worded better 🙈🤪
I took your reply as positive Thank you. Too long have I sat in front of Rheumys and Doctors tongue tied knowing they don't believe me. I'm just hoping when I see Rheumy on 12th he will be talking me through how they are going to help me moving forward. When I opened the letter I cried shaking freezing shock i think it's been a long journey 5 years. I just hope when I see him he doesn't say this is a other symptom of Fybomyalgia. Dry eyes, dry mouth, raynauds, carpal tunnel, Hiatus Hernia, Gerd, rash over nose and cheeks, aches and pains.
Hopefully there's hope for us all and answers for you too🤞🤞 thank you.
Yes that is a diagnosis I believe! They count the foci clusters of lymphocyte infiltration of each gland. Over 50 counts as 1 - and you only need 1 foci cluster for a diagnosis of Sjögren’s according to the ACR and EULAR diagnostic criteria.
Mine was 5/5 and, sad to admit, but when I was told I felt I’d won the lottery. Unfortunately I didn’t get the money to go with my win though!
So I would expect you to now be diagnosed with seronegative Sjögren’s rather than Fibro. If the rheum tells you that you still have Fibro then you should be aware that FM might well, in fact, turn out to be small fibre neuropathy strongly associated with seronegative Sjögren’s.
5-7 years is the average length of time it takes to get a diagnosis of Sjögren’s. Shocking eh? Here’s a great blog for you to read while you wait until the 12th - which isn’t far away at all really! X
sjogrensadvocate.com/sjogre...
Thank you so much for all your information it really means a lot to me. For the first time I feel like a weight lifted off my shoulders. I think this means at least I'll be took seriously. It will be 5 years in may since I had a suspected small TIA and I've been ill ever since gradually getting worse one symtom after another. It's that feeling of release I cant explain how I feel. Thank you so much I'll have a read of your links. 🙊🙊
I do so understand and relate. I was misdiagnosed with RA in 2011 - already had hypothyroidism and a lifetime of other autoimmunity. Yet I knew I didn’t have RA.
The problems being taken as seriously as I should have been were by no means over in the years following my rediagnosis to Sjogren’s in 2016.
But at least the lip biopsy diagnosis has given me the inner confidence to trust myself to know when a diagnosis feels right or not.
You will need to read up though because many rheumatologists underestimate or just don’t know nearly enough about the many various manifestations of Sjögren’s and comorbidities.
The links I’ve given you are to a doctor who is also a sufferer. I have found her to be the most inspiring advocate. Best of luck. 😊
This is the problem we have to fight to be heard. It's our body and we know when something not right. I'm glad you have the correct diagnoses . I just hope for everyone out there suffering never give. My Rheumy specialises in Sjorgrens and research. I'm going to have a read of your links now. Thank you.
m.youtube.com/watch?feature...
Hopefully you can open the link I have just started watching these episodes and find them very informative especially to show a family member or friend. Rather than read to hear patients talking about their symptoms. X
Thank you I'll have a look on your link. ❤
sjogrens.org/home/about-sjo...
Thank you so much ❤
Thank yo so much for sharing this information. Let's hope when I see my rheumy on the 12th he'll be helping me I so hope so. It's been a long journey made to feel like aa fraud. Dry eyes and mouth symptoms didnt start until April last year. I had all other symptoms mainly from 2015. But looking beyond I think I was having small flares of different symptoms like stomach swelling and feeling food stuck in throat. Joint pain in shoulder frozen shoulder. Itchy Rash around eyes and mouth which seemed to appear seasonally. Sinusitis, labrythitis. These used to come and go so I always forgot and moved on with life. It's been chronic since 2015 so something was always there and the fatigue because it's been there so long becomes part of life so you forget how active you were before. Socialising with family and friends is such a chore I just to stay at home. I work all week mon to fri full time dont know how we do it. We all just get on and fight as best as we can make do. 🤞🤞🤞
Definitely sounds like a diagnosis to me,I hope your appointment goes well.Do you mind me asking what your biopsy was like.Today I had blood tests, schirmers test and saliva test for sjogren's but will be having the biopsy soon also.
Thank you Kels
Honestly it was fine, once i'd had the needle to numb the area i couldn't feel anything at all. I never had any pain or discomfort for the first 4 days. The stitches became a little uncomfortable and came out on 7th day. I do still have a tiny bit numbness 4 weeks on but nothing that really bothers me. I am pleased I opted to have it done. As my Rheumy disnt think I'd benefit and said he definitely thought it was Fybomyalgia. Hope all goes well and thanks again. X
Thanks when I saw the rheumatolgist today he also said he thought I had fibromyalgia, but I told him I wanted to be tested for sjogren's.
I think sometimes we just need to speak up and be heard as doctors only spend minutes with us so don't really get what we are going through. I'm not sure about anyone else everytime I have an appointment i seem to become this nervous wreck and do not explain my symtoms as they really are. Good luck get all the tests it takes a lot of your time and very deflating but hopefully it will be worth when I see him on Thursday. Good luck.
Yellow- Petal - one way to look at it is if the test was not going to determine a diagnosis, why did he do it? Sjögren’s is hard to diagnose. But I would take the comments to mean your symptoms are being confirmed by biopsy.
I know your doctor will be able to explain it all to you.
Good luck!
K
Thank you K I hope so your comment is very reassuring. I will update on thursday. Does anyone know what is meant by non specific changes only for my saluvary gland ultra sound. It's this that making me think I'm going to be disappointed. 😰
Just saw a study that determined the biopsy is both sensitive and specific. That is not true of, as an example the ANA test. I don’t think they would do an invasive test unless the results were significant. But your doctor is the one to put it all in context.
Ultrasound could be very different. They are never very specific!
K
Yellow-Petal, I just recently had a lip biopsy and was told it is the gold standard for ruling out Sjögrens. I also tested negative for SSA and SSB. And my Schirmer's test was quite good. And after that I thought for sure that the lip biopsy would be negative, but I ended up with a focus score of 4/4. So you just never know... My RF and ANA were both very high. Good luck with your diagnosis. 🙏🤞
I was same - 5/5 for me despite normal ultrasound. People with our presentation apparently tend to have different symptoms with more neurological and fewer glandular features.
Hi Twitchytoes! Thanks for the info. Will be posting my story soon, with all its ups and downs. Hope to connect with you again....you seem very knowledgable and would be a blessing for a newbie like me. Lol! Take care. 🙏❤
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