Author Topic: Hi everyone - sero negative Sjogrens  (Read 15417 times)

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #15 on: October 28, 2011, 09:14:58 AM »
Thanks everyone.  I guess I am feeling sorry for myself in this initial early stage- I cannot stand the thought of losing my teeth, and cant believe I am getting cavities. Mind you, being dry 'down below' doesnt sound like a picnic either.  :o

I wonder if this will show up in bloods at some point if I am being tested every 4 months?

I am off to see the Queen tomorrow in Perth, so that is something I am looking forward to - will dose up on painkillers I reckon, smother myself in suncream and take the camera.

« Last Edit: October 28, 2011, 09:40:28 AM by Corella »

jasonsmith

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Re: Hi everyone - sero negative Sjogrens
« Reply #16 on: October 28, 2011, 05:01:12 PM »
I'm seronegative as well. But every cause has been ruled out other than Sjogren's. And none of the docs can explain what could be causing the symptoms other than Sjogren's.

I think alot of docs rely too much on bloodwork and ignore the symptoms. Back in the day, they only had symptoms to go by. But bloodwork isn't always accurate.

Also, there are alot of conditions out there where there are no tests for. You have to go by symptoms and rule out other things. Like with Irritable Bowel Syndrome.

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #17 on: October 28, 2011, 11:23:01 PM »
Well today I started to add to my 'sjogrens kit', bought some Biotene spray for my mouth, some sugar free gum - the chemist said that is as good as anything, although I hate chewing gum but needs must I guess, I bought some Panadol Osteo as I have heard that is good for pain and I take painkillers with calmative at night - Mersyndol Night strength, I have my mouthwash for bedtime, a selection of eye drops.

Thats it till I start the dexamethasone and the plaquenil - the plaquenil will cost me $35AUD for 200 tablets, it all adds up with the supplements as you all know but, I have gotten used to my 'vitamin supper' :D

On a lighter note, I went into Perth today and managed to get a glimpse of the Queen, I was so excited - I love all that ceremonial stuff and the atmosphere was fab. 

I have been a bit down since diagnosis and getting out really cheered me up, although the sun has made me hurt a bit but it was worth it.

Thanks for all your replies, I dont feel so alone now.

smallfry

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Re: Hi everyone - sero negative Sjogrens
« Reply #18 on: October 29, 2011, 05:21:45 AM »
Hi Corella

I just wanted to welcome a fellow Aussie,I noticed that you are in Perth I am in Brisbane, I am so pleased that you enjoyed your visit with the Queen It was really lovely to see her here again.

I was diagnosed in 2008 with positive bloods and was fine up until 12 months ago when it took a turn for the worse. I started plaquenil 4 weeks ago my specialist has me at the moment going through a heap of tests as in a MRI brain EEG all new blood workup. he feels that it might be affecting my brain and causing me to have  mild seizures anyway i am back to see him in a couple of weeks time for the results. But that's enough about me.

It looks as if you have been having a pretty rough time of it yourself, anyone that has any sort of an idea about this condition will know that you are not a hypochondriac, so please don't allow yourself to feel that way as here are heaps of people suffering from the same condition so we all can't be hypochondriac's.

I can remember when i was first told that i had Sjrogens I didn't take it very well , its only understandable that there will be a lot of mixed emotions because it is very scary.

You will find  heaps of understanding, friendly and very knowledgeable people here don't be afraid to ask questions.

Again welcome and take care,
Cheryl

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #19 on: October 29, 2011, 06:19:15 AM »
Hi Cheryl, you are in Brissie - nice to know someone in the same country, we get citizenship in March, cant wait.

Can I ask, do you react badly to insect bites? I was in hospital a couple of years ago with a mozzie bite, just been round a friends this evening and have bites on my left foot and right ankle, they are burning, hot, red and really swollen - I seem to react to insect bites and dont if it is an auto immune thing or not but just lately as soon as I am bitten I start to react and for the first time tonight, I started to wheeze as well.

I am at home with my feet up with SOOV insect cream on and I have taken anti histamines but I dont feel good at all, I was just wondering if anyone else reacts to insects and stuff.

I took my panadol osteo this arvo and was quite impressed, so that is something.

I wish my bloods were positive, I have waited a while to get diagnosed well i say a while, since March this year which isnt that long I guess, and I have read about people seeing a different Rheumy and being told they dont have it, I suppose I am lucky my Rheumy has taken the word of my dentist and eye specialist.

Oh well with summer on its way, looks like I will have to get hats and lots of sunscreen, god knows how the sun affects me but it does.  But I will just buy different clothes and do what I have to.

:)

Patze

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Re: Hi everyone - sero negative Sjogrens
« Reply #20 on: October 29, 2011, 06:19:33 AM »
Hi Corella,

Let me also welcome you to the SJS World and family! 

I too hope that you find this board as wonderful and helpful as I have.

Take care of yourself -

Patze
Our home page  http://www.sjogrensworld.org/index.html
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Sero Negative Queen

Still in the hunt

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Re: Hi everyone - sero negative Sjogrens
« Reply #21 on: October 29, 2011, 06:20:04 AM »
Welcome,, Sereo negative here too,, but everything has been ruled out for me also,, shame it takes so long to get a Dx,, lot of times we just get that,, are you depressed?,, everything ok at home?,, no,, we are sick,, glad you saw the queen, I saw John Kennedy when I was a kid,, I stilll rememebr that,, I swear he waved at me,, few months later he was dead

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #22 on: October 29, 2011, 07:05:43 AM »
Welcome,, Sereo negative here too,, but everything has been ruled out for me also,, shame it takes so long to get a Dx,, lot of times we just get that,, are you depressed?,, everything ok at home?,, no,, we are sick,, glad you saw the queen, I saw John Kennedy when I was a kid,, I stilll rememebr that,, I swear he waved at me,, few months later he was dead

I wanted to post a piccie on here but I dont think I can.

My foot and ankle are so swollen from the mozzie bite, I cant walk now - thats a pain reacting like that.

Yep, the depression diagnosis gets thrown around quite a lot, funny how they can pin a diagnosis that has no obvious symptoms such as depression as it isnt always apparent, yet Sjogrens/Lupus which has obvious symptoms can so easily be dismissed.

You will think I am sad but I am counting down the hours till pain relief time (cant help it)

You were lucky to see JFK, I wish I could say the Queen waived at me (well I can pretend she did.)


Narablueeyes

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Re: Hi everyone - sero negative Sjogrens
« Reply #23 on: October 29, 2011, 07:22:01 AM »
Welcome,, Sereo negative here too,, but everything has been ruled out for me also,, shame it takes so long to get a Dx,, lot of times we just get that,, are you depressed?,, everything ok at home?,, no,, we are sick,, glad you saw the queen, I saw John Kennedy when I was a kid,, I stilll rememebr that,, I swear he waved at me,, few months later he was dead

I wanted to post a piccie on here but I dont think I can.

My foot and ankle are so swollen from the mozzie bite, I cant walk now - thats a pain reacting like that.

Yep, the depression diagnosis gets thrown around quite a lot, funny how they can pin a diagnosis that has no obvious symptoms such as depression as it isnt always apparent, yet Sjogrens/Lupus which has obvious symptoms can so easily be dismissed.

You will think I am sad but I am counting down the hours till pain relief time (cant help it)

You were lucky to see JFK, I wish I could say the Queen waived at me (well I can pretend she did.)

Hi Corella and welcome.  That sure does sound like what we southerners (I'm from Texas) skeeter syndrome.  An allergy to mosquito bites is not really surprising with AIs.  Long sleeves, long pants, and socks are my norm even during the summer.  As well as spraying repellant all over my clothes and exposed parts.  I use a hydrocortisone cream and benedryl whenever one of those little buggers gets a bite through.  SOMEHOW this summer, in one evening, I got SIX of them on my left foot and two on my right shin.  I covered, I sprayed and yet they got through.  That was like back in august and they're just now starting to disappear.  I hope you get relief soon!!

jaygee

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Re: Hi everyone - sero negative Sjogrens
« Reply #24 on: October 29, 2011, 08:34:31 AM »
Hi from another sero negative person  :D

I also have terrible reactions to insect bites.  I can remember, as a small child (pre school) have bandages and cream from my ankles to my thighs on both legs, where I had spherical blisters.  They were insect bite reactions.

Since being on plaquenil, the past couple of years, I no longer have such a bad reaction, my symptoms are also greatly reduced, too.  Hope you find something that works for you, too.  xx

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #25 on: October 29, 2011, 09:22:25 PM »
Oh my goodness, this morning my ankle is enormous - there is no shape, it looks like I have 'cankles' and my left foots is so swollen I cant put it down so I am on the sofa with an ice pack on it.

I am due to start the plaquenil in two weeks but I might wait till after my college graduation party on 25 November as I would like to have a couple of drinks and I hear you cant drink on them.

My reaction to insect bites is getting worse with each one, I wonder what happens in the body to cause such a thing.  Oh well, just call me 'elephant feet' today.

smallfry

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Re: Hi everyone - sero negative Sjogrens
« Reply #26 on: October 29, 2011, 11:13:20 PM »
Hi Corella,

Can't say that i suffer from insect bites, but it dose sound as if you have a bad allergy to them have you tried palarmine?

If they are swelling that much it might mean a trip to the doctor. I don't know about other people but i have had the very odd  glass of wine, while taking plaquenil I did tell my that i do have the occasional drink and he didn't say not to.

I just had a look and there is a thread here re; wine and plaquenil that you might like to have a look at.

Look after those feet
Cheryl

soycoffee

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Re: Hi everyone - sero negative Sjogrens
« Reply #27 on: October 30, 2011, 01:46:34 AM »
Dear Corella, and others on this thread

It was only this year (2011) that I told my PCP that I probably had Sjögrens, and had made an appointment with the Sjögrens Syndrome Center. He already was aware of the flare that started around the beginning of September, and called up a basic panel of tests to run when Sjögrens is suspected. He is not the sort of doctor to take general dysphoric (feeling bad) symptoms seriously, but he was willing to order the tests. He did say ´It can´t be Sjögrens. Sjögrens patients are thin,´ something I am not.

My tests came back barely positive for Sjögrens, ANA and SSA, otherwise rheumatologically unremarkable. There are some anomalous tests I will have to look up, but color me outside of the impressive test results for Sjögrens.

Yet, in 1996 I first suspected Sjögrens when I went to a dentist in November, had a few xrays, the dentist filled a couple of small cavities, and sold me on teeth whitening. Five months later I went to a different dentist. She took xrays and told me my teeth were riddled with decay, and I would have to have a complete mouth reconstruction, which she could not do. I knew there was a disease that involved dry mouth and dry eyes, maybe the dry skin I have had since birth. It was just that so far as I knew, there was no treatment for it, except as the reconstructive dentist I found two years later mentioned, there was Biotene.

By that time, after a long long search for dental treatment and care, I found a good man who could deal with my small mouth, and my tendency to bleed too much. So he took out all my top teeth, and built me the denture to replace them. He also did root canal on my lower teeth.

By then it was 1999, and Pilocarpine -- Salagen -- was on the market as a treatment for lack of saliva. This wonderful dentist FAILED TO TELL ME about Salagen, as a stimulant for saliva. This wonderful dentist FAILED TO TELL ME that saliva was the way the body protected teeth. So I felt terrible, guilty, because all my life I had had teeth with few cavities, and now suddenly they were disintegrating. 

Four years later, I was back to see him again, because now my lower teeth were disintegrating. He managed with heroic efforts to salvage five or six teeth in the front of my mouth that would support a lower denture.

By then I had a dx of Fibromyalgia, and a PCP who insisted that I exercise, as a treatment for not wanting to exercise. BUT she believed that Fibromyalgia was a real disease, which counted for something.

I did not have a Sjögrens dx, because I thought, erroneously, that there was nothing but some OTC aids like eyedrops and Biotene, which I had tried but which did not work for me. So what good would a dx be?

If you think you have test negative Sjögrens, do as Corella's dentist recommended, and have checkups every three months. See if a friendly dentist or doctor will prescribe Salagen or another saliva stimulant (not Biotene). Don't blow it off, or postpone those dental visits. Remember my sad tale. It took only five months for my mouth to decay irreperably. Now those five lower teeth that were herocally salvaged have not decayed, but the anchor teeth have been resorbed by my body, perhaps for their calcium content.

Even now, the Sjögrens Center Rheumatologist that I see seems to use the positive tests, admittedly at low levels of positive, as measures of a sort, measuring the strength or degree of disease. We can argue that on this forum. Labtestsonline reports only the meaning of positive readings of, for example, ANA or SSA.

I was trying not to veer off in this direction. We do need to keep on redefining the clinical indicators of Sjögrens, and getting the word out that there IS treatment that leads to prevention of further problems down the road. The message that Venus Williams was receiving TREATMENT for Sjögrens was an eye opener for me.

OK I wrote two messages in one. It is late. Good night all, and good luck.
Soycoffee

Corella

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Re: Hi everyone - sero negative Sjogrens
« Reply #28 on: October 30, 2011, 04:27:49 AM »
Excellent info - thank you for that.

Is Salagen a prescription only medicine? I am seeing my GP next week so will ask about it, I carry Biotene in my bag as well now.

My feet are still enormous and I cant walk properly and the itch is awful, I am going to have to be very careful with Mozzies this year.

Is anyone on the board from Perth?

jasonsmith

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Re: Hi everyone - sero negative Sjogrens
« Reply #29 on: October 30, 2011, 06:11:30 PM »
There's another option other than Pilocarpin. Which is Evoxac. As Evoxac is supposed to last longer with less side effects than Pilocarpin. But everyone responds differently.

Those meds can only work if your saliva glands still have some function left.