Hello all
I've got an appointment at Guy's Hospital! It's for 10th March and is with a professor of dentistry? I find this is bit strange as, after my operation, East Grinstead hospital said they were going to refer me to the SJS team based at Guy's. So, I thought I would be getting a letter from a rheummy?
The letter says I should expect to be there for three hours for tests so I'm guessing that they will be carrying out the saliva tests etc on me and are starting in the dentistry area. Any thoughts?
Another question for you gurus! My right side of my neck is up again, so I thought I would try some massage as some of the posts suggest. Is the correct method to start at the top of my jawline/bottom of my ear and then massage down to the chin area? Any advise would be helpful as I'm not keen on my current chipmunk look.
Also, for the Brits among you. Found a helpful spray from Boots called Expert Dry Mouth Spray (found in their mouthwash section). Only costs a couple of pounds and when the description says 'if your mouth feels like a mini desert'.... Say no more, I was off to the till immediately! Does make a difference.
Anyway, better go. Hope everyone is ok and hanging in there when the days feel tougher than usual.
Cheer
Sarah
Sarah thanks for the heads up on the mouth spray !!
glad you got an appoinment, dont know enough about dentistry side of it so will leave that to someone who does. As for massage in anay massage encouraging lymph drainage always work from furthest away point and work towards the heart, this way it stimualted the lyph drainage and going in the right direction for disposal , hope this helps, i have found though as my glands are really sore right now, that a cold face cloth soaked then put in freezer for 5 mins then wrapped around my neck does ease it for a while when it gets bad
T x
Hi Sarah :)
Once in the system - hopefull they'll be able to link you in to other departments. I know my hospital opthamologist offered to link me to dentistry so maybe it can be done from dentistry to rhematology as well. certainly worth asking. (I'm not in London)
Thanks for the tip about the mouth spray. I've looked for one before and not seen one in the UK but I'll head for my local Boots soon and see what I can find!
Take care - Scottie :)
Hi Sarah
Are you seeing Prof Angela Fortune by any chance? She's a wonderful lady. My son saw her at the Royal London Dentistry school - we travelled from West Yorkshire and the rail fare cost ?250, but it was well worth the journey.
Kathyx
Good luck at your next appointment in March Sarah! I hope you get all of the referrals you need to the right docs....but it sounds like you at least got your foot in the door and are on your way!
Keep us posted!
Thanks for your messages.
Going to see a Professor S Challacombe, so we'll see how we get on.
For you guys in the UK, if you can't get hold of the Boots mouth spray, drop me a line via the forum with your address details and I'll pop one in the post for you. As I said, they are not expensive and I can post through work so wouldn't cost me a fortune. If you like it, you may be able to purchase via the Boots website, if you can't get locally. I got mine via a London store, so they may have more choice. Anyway, offer is there, just let me know.
Cheers
Sarah
Hi Sarah-
I just wanted to let you know what my rheumy said about massaging the parotid gland as I get swelling and have had it block up before (suspected stones) - he actually referred to it as "milking" the gland. I start by putting my whole hand on the side of my face with the four fingers along side my ear and my thumb behind the ear lobe. The gently rock the hand from the fingers down through the palm and thumb. As I do this, I slowly move down so the base of my palm cups under my chin below my ear, then slowly mo e toward my mouth, continuing to rock my hand from fingers to palm. He said not to use a whole lot of pressure but enough to just gently move any tiny stones that may be there out. He suggests I do this on a daily basis, even when I'm not having soreness or a feeling like half my mouth just turned off the spit.
When it does feel swollen and my mouth feels even more dry than usual, he also recommends warm compresses and sour lemon candies -sugar free if I can find them. Though just a warning on the sugar free candies - of course I'm very concerned about my teeth, but I can't handle too much of the zorbitol and other artificial sweeteners used in sugar free candies - it gives my nasty diarrhea if I ingest too much of it, and for me, just a few candies can set things off.
Also, since I've had swelling and stones in the parotid, my rheumie increased my Evoxac from the usual 3 times a day to 4. Of course, I wouldn't make that kind of change, if your on Evoxac, without consulting your rheumie.
As for the dental referral, unfortunately, many Sjoggies have terrible trouble with cavities and other dental problems because of the dryness and proper dental care is a must. I've been fortunate (and VERY diligent about brushing and flossing) and usually only have one cavity a year and that's in a tooth where a decades old filling has failed.
I'm not a Brit, but I'll be looking for the mouth spray. I have a minor procedure coming up on my knee and then a back surgery sometime later this month, and I like to have a good moisture spray going into these things since you have to go with nothing by mouth for 12 hours. I can't go that long without sipping water!
Good luck with your dentist and hopefully you'll get a referral to a SJS team soon,
Tracy
Hi Sarah,
I had my first appointment at Guy's hospital last October 08, with Professor S Challacombe at the oral medicine/ Rhuematolodgy department up on the 22nd floor which holds a clinic just for sjs patients.
On the first visit a lot of questions were asked relating to symptoms and medications that i am currently taking, I had been referred there by my Rheumy from Lewisham hospital - so they already had an outline of my medical history.
The tests consisted of having a saliva flow test, schrimer eye check to test tear production, test to check for yeast infections in the mouth, and a cart load of blood tests, this all took about 3 hours to complete.
I then had another appointment in December 08 to have a lip biopsy and a saliva gland scan.
I then had another appointment in Jan 09 for the results of all the tests, which came back as stating all blood tests were positive for sjs, but the lip biopsy came back negative which maybe because when the biopsy was done, she could only get 4 glands instead of the usual 5 and that they were so very small that they didn't show the infiltrations that they look for.
I was also DX with Raynauds and now awaiting blood test results for APS (Antiphospholipid Syndrome).
I hope this is of some help to you, if there's anything else i can help with please let me know.
Take care Carol
Hi Ladies
Tracy, make thanks for the massaging help, I shall have a go this evening. Am happy to post one of the sprays over to you wherever you are. Can put through our work post system, so wouldn't have to pay any postage. Let me know your address and I'll get one sorted for you. Also, I'm not sure if I've actually got stones? Defo got swelling and have a small lump behind my ear, by the earlobe, could that be a stone?
Carol, brilliant to hear from someone who has actually been treated at Guy's at Professor Challacombe's clinic. From what you have described, I'm certain that they will do the same to me as they have told me to expect to be there for 3 hours. I was planning to go to work afterwards (I work about 15 mins away from Guy's) but I'm unsure if I'll feel like it after the tests. How do they do a lip biopsy?
Cheers
Sarah
Hi Sarah,
Lip biopsy - A small incision is made just inside the lower lip area, done under local anesthetic, although my incision was a little larger than normal, as she had trouble finding the saliva glands (mine are very small apparently), as i said previously she eventally found 4 instead of 5 which they normally like to have. I had 6 dissolvable stitches in the wound.
My lip was very swollen that evening, and when the numbness wore off the area was very sore, just took pain killers that night and next day, and a bit uncomfortable for the next few days, till all stitches fell out, about 6 days.
Once all the stitches were out my lip felt fine and I've had no problems.
I must admit i was a bit worried about having it done after some of the things I've read, about people being left with a numb lip and problems afterwards.
But for me it wasn't as bad as i thought it would be.
Would i have it done again, proberly not, only as i have tested positive to (SSA (Ro), SSB (La) ANA, RF) i have a DX and receiving treatment.
Forgot to mention on the last post, that on the first visit i also had photo's taken of the inside of my mouth as well.
I hope this is of help to you.
Take care Carol.
Dear Sarah, hope your visit goes really well on Wednesday.. and I hope the tests are not too uncomfortable,
It is nice to know that here in England there is some knowledge somewhere on Sjogrens Syndrome.
Here up North I feel like an alien when I mention my weird symptoms, but I suppose I could be worse!!
I'm having loads of problems with my dry eyes at the mo' By the way there was quite an extensive thread on site a little while back, about the pro's & cons of lip biopsy... put a in a search and you might find it ..
I have purchased the Boots Expert dry mouth spray here in my small home town, so others should be able to purchase it easily, I personally think that Oral Balance by Biotene is by far the best, but dreadfully expensive at ?7 50., although my Doctor does now supply me with mine, I still buy extra quite often as my symptoms are defo increasing with age. Good Luck and please let us know how you come on. Best Wishes, Dolly
Where up north are you Dolly? Like to picture where we all are while we are posting! I'm in Warrington, Cheshire .... and its freeeeeezing tonight!
Hi all - I am in the north too - Ripon in Yorkshire.
Just a note re the Boots mouth spray - yes it is useful, but in a previous post I mentioned that all BioXtra products (similar to Biotene and better than the Boots one) are available on prescription here in the UK. They make toothpaste, mouthwash, moisturising gel, gel spray, gum and sucking tablets. They are very beneficial for teeth and oral health too!
Cheers
Tabbykitten
Hi everyone
As this thread seems to have become a meeting place for Ukers/Brits I thought I'd ask if anyone else saw the mention of SjS in Saturday's Guardian newspaper?
It was in the colour magazine section in the 'ask the doctor' column. The query concerned waking regularly in the night with a dry mouth and, among other suggestions, the doctor alerted the woman to SjS. Just good to know that SjS is on the radar.
I'm not in the UK as you know, but it's always great to know that Sjs is in the news. We can use all the publicity we can get. ;D
Pooh
Hi Harrigan, I am up in Northumberland. We have had some snow, and it has been freezing cold at times. (or is it me )
I have certainly seen much worse Winters than this in my time. Many times we had to dig our way out of the back door,and the snow used to drift miles high in the field near by,
but life and school still went on as usual! We used to send photographs of the snow here, to our relatives in Devon who never ever got snow.
They are now!
Just heard on the news that more is forecast for tonight, all over England. Me thinks I shall stay in bed tomorrow then!
Cheers Dolly
Hi again to fellow UK members
Sorry if this is not the right place but have been wondering if anyone in the north yorkshire area or further afield wants to get together and form a group? I contacted the BSS when I came to the area but there are no groups around here so sorry to say I have not joined the organisation.....
Anyone interested please get in touch. I am in Ripon, North Yorkshire.
Tabby
Hi Tabby :)
When I was looking into groups I was told there was one in Newcastle but there isn't. There used to be. I was told that there was one in Leeds though.
Take care - Scottie :)
Tabby and Scottie
I went to the Leeds AGM about 5 years ago (when SJS was suggested, but then dismissed) and I didn't find it a positive exprience at all. I joined BSS to go to their AGM in Birmingham (which was very good). As a member, I now get newsletters, and a recent one mentioned that the Leeds group were closing, due to lack of need/members.
I'm not sure I would be up for regular meetings, but I would love a get-together sometime. Tabby, I'm in west Yorkshire.
Kathyx
There's definitely a northern 'contingent' around! I'm hoping to head south soon to visit my daughter in Oxfordshire and was hoping to maybe see Mim at some point.
Am I likely to pass anyone on my way down the M1 - or way back up the M6? p.m. me if you are anywhere en route and I'll drop by for a cuppa!!
take care - Scottie :)
Dolly - you are just a little north of me. I'm in Gateshead.