How is Sjogren's diagnosed and how long does it take?
Posted , 9 users are following.
I am a Ty[e 1 Diabetic (33 years) and have been experiencing problems for a few months with what started as a purely dry mouth and has now changed to dry mouth with excessive saliva. My eldest sister has Sjogren's and there is a thread of auto immune conditions amongst 3 of the 4 sisters. My GP referred me to an oral surgeon who had an ultrasound scan done which showed no stones or growths in my salivary glands and bloods which revealed nothing. My GP then had a second lot of bloods done (Rheumatoid related) but again, these have shown nothing. I am not due to go back to the hospital for 8 weeks but the condition is worsening and becoming unbearable. My mouth overall is VERY dry, my tongue is very sore and yet I'm getting excessive salivation around my teeth (dentist has ruled out a dental problem). I am using gels and sprays (prescribed by my GP) and drinking water and eating healthily but nothing helps and I am becoming desperate. Please can anyone tell me how long it took for Sjogren's to be diagnosed, how it was done and what I can do in the meantime to make things more bearable. Many thanks.
1 like, 37 replies
wendy58491
Posted
If I can just say that some of the terminology and phrases are not familiar to me and therefore, there are things that I am unable to comment on as yet. However, I will respond to everyone over the next day or two, to the best of my ability and again, thank you!
lily65668 wendy58491
Posted
Hi Wendy, Thanks for the reminder that not everyone is familiar with the SS jargon we regulars tend to use among ourselves!
I don't think there's anything that's not easily findable on-line, and you can always ask us for clarification as well.
wendy58491 lily65668
Posted
Tumtum1963 wendy58491
Posted
Hi Wendy. I think a lot depends on your personality type. If, like me, you are a "I've got to know no matter what it takes" type then you might decide, as I did, to get a lip biopsy done. I did pull out twice of this procedure previously because an oral surgeon and Max Fax both told me I was unlikely to have Sjögren's because I was producing plenty of saliva and my teeth weren't/ aren't rotten.
However I have a questing personality and run with Gallileo's saying "all truths are easy to understand once they are discovered. The point is to discover them". This is the way I deal with my rubbish health - dry eyes and mouth not withstanding. I had a misdiagnosis of RA and am Hypothyroid so autoimmunity and I have grown up together. I have tried every drug thrown at me and have had severe allergies or reactions to almost all - but I still keep trying - crazy I know but we only get one shot at life.
Following a very emotional visit to my new dentist at the start of last year about so-called Burning Mouth Syndrome - following a few awful years of small fibre neuropathy everywhere, I was referred to my new oral consultant - a star! At the same time my ANA flagged up high but not the specific Sjögren's antibodies, Ro & La.
A new rheumatologist looked at my quite severe neuro symptoms, studied my bloods and saw I had paired bands in my spinal fluid - and suggested I see this top oral consultant about having a lip biopsy. I did and she convinced me that this would be pretty definitive either way. So I had it done last year and it was 100% positive.
This has enabled me deal with the symptoms and have easier access opthamology, get many repeat prescriptions and a final immunesuppresant - which is currently looking like another curse but hey ho.
I had to know what was causing all my symptoms and knew i didn't have RA by then - so what was it? I had to know I wasn't just going nuts! And now I do know for certain what is causing my entire system such horrible nonsense - (primary) Sjögren's Disease.
Whether this helps the actual symptoms much is debatable but it has helped me to know and to look all doctors in the eye (eye drops afterwards!) and not take any nonsense about being post meno or health anxiety or ME or Fibromyalgia.
I must also add that Sjögren's presents very differently for almost all of us. Some have the neuro symptoms, some start with digestive problems, some have organ damage where others lose their teeth and have damaged corneas. Some only have mild Sicca where others have it all.
wendy58491 Tumtum1963
Posted
Many thanks for your reply Tumtum1963. It was easy to read and was interesting and informative. This is very early days for me and I don't know as yet where I will go with this. I've been patronised by the oral surgeon who suggested I was imagining it but like you, I am strong and will always push for answers. So far, nothing has come up on any of the tests and at this stage, I am taking herbal supplements and just researching and researching! (And I love your comment about looking the doctors in the eye! While I hope to wake up one day and find the symptoms have disappeared, on the other hand I want to be proven right, to get results and to hold my head up high)!
Tumtum1963 wendy58491
Posted
amkoffee wendy58491
Posted
aitarf and tumour you two should stay off these sites if you can't be nice. Even if you disagree with what I said you could still have said so without being so horrid. Everyone is permitted to have their own feeling and all the two of you did was make me feel like trash. I don't like feeling like I do and the two of you have successfully made my day suck even more.
lily65668 amkoffee
Posted
Dear amkoffee,
I'm sorry to hear you're having such a rotten day. It must be awful being so badly affected by your autoimmune conditions. I've read aitarg's and tumtum's posts and I have to say I can't see any malicious intent in either of them, nor can I see any suggestion that either sees your symptoms as made-up or imaginary. Goodness knows, practically all of us in here have faced doctors who insinuated - or even stated outright - that our symptoms were imaginary. We certainly wouldn't make the same suggestion ourselves!
As you say, everyone is indeed permitted to have their own feelings and, as tumtum said, we all experience this disease in different ways.
As I see it, there is no hierarchy of suffering, either in these forums or in the world in general. Some of us are given a lot to bear, whether physically or in our life in general, whereas some of us seem to get off lightly. By the same token, what seem a minor problem to one person will be perceived as being almost intolerable by another. Neither is superior to the other, and both deserve to be listened to and taken seriously. We're just different.
I hope you'll be feeling better soon and that you'll stay with us.
Lily xx
Tumtum1963 lily65668
Posted
Thank-you Lily. You are quite right. I certainly would never wish to cause anyone distress and if I have done so inadvertently then I do sincerely apologise. As it happens I tend not to use these forums because we can't edit and they aren't community only but in future I shall probably be staying clear although I've re-read my comment and can't see anything remotely nasty in its content let alone being addressed as Tumour for? ??
wendy58491
Posted
I'm sure this thread will soon close down so I just wanted to send thanks to all of you for your responses and to send good wishes to you all. I am sorry there was a little bit of ill feeling when peoples' words were misunderstood and perhaps taken in the wrong way but I think overall, from my own perspective, I have received some sound advice and some interesting perspectives. I DO wish you all well and above all else, I hope that we all are able to live lives that are at the very least, comfortable.
lily65668 wendy58491
Posted
Hi Wendy,
First of all, I'm sorry to hear of your loss. Sometimes the death of friends or colleagues can affect us as badly as a loss in our immediate family. I lost two dear friends in 2016, and I believe the stress of the final months of one of them may have triggered the disabling flare-up of tendinitis I suffered that year.
I don't think you need to worry about this thread closing down. I've been around several of these forums for three or four years now, and in my experience threads only get deleted if someone reports another poster - and not always even then. Do stick around if you'd like to and let us all know how you get on with your quest for a diagnosis.