Author Topic: Another newbie  (Read 2195 times)


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Another newbie
« on: February 28, 2014, 11:00:18 PM »
Hi all, long time lurker first time poster.  Thought it was time I introduced myself.

I was diagnosed in December 2013 after having first appearance of symptoms of extremely dry mouth in April 2013. 

I associated the dry mouth with a change in diet as I had started drinking coconut water and was buying pre-prepared meals from a deli.  I thought maybe something in the coconut water wasn't agreeing with me or the meals were laden with salt. 

I was having a meal with a friend where I couldn't chew or swallow food without water.  She mentioned that her mother sometimes got blocked salivary glands and she would have a dry mouth.

I took myself to my doctor expected something for a blocked or infected gland.  Instead he sent me off for blood tests for a syndrome I had never heard off.  Tests came back negative, so he sent me off to a RA.  I couldn't get to see the RA until July 2013.  More blood tests with a note to my doctor that if they came back negative to do a lip biopsy. 

The second lot of tests were still negative, so I had a referral for a lip biopsy.  As I had by them done plenty of research and reading, I knew that some people had some complications arising from lip biopsy..permanent numbness.  I expressed concern to my doctor, so after discussion it was decided to refer me to a plastic surgeon who would know how to work and cut around nerves.

Specialists in Tasmania are few and far between, so I didn't get to see the surgeon until mid November for an initial appointment.  Finally had the biopsy in December and from that was diagnosed.

At this point in time I appear to suffer dry mouth only and the degree of that varies.  I wouldn't consider it extreme as it was when I first started and am not taking any medication and will go back to my doctor if it worsens for more than a very short period of time.

There is a possible bowel issue that may be related or could just be an intolerance to grains, wheat and gluten.   If I do not eat grains/gluten this is substantially reduced (without going into too much info..sometime there is mucus leakage and other times stools have substantial mucus.  This started occurring in about Jan 2013 after I had a couple of internal haemorrhoids banded, and put it down to that.  I have a colonoscopy due in a few months so this will be investigated further then.

My doctor was not surprised with the diagnosis as I have had extremely high ESR and CRP readings for 10 years without symptoms or anything that would give an indication of any issues.  In addition to those readings there is a family history of lupus and other auto-immune issues in the family of which the doctor was aware.

I have been reading the boards since about April or May of last year, and many of the posts here have really touched me and I have seen courage beyond belief many times. 

« Last Edit: February 28, 2014, 11:02:03 PM by 2shea »


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Re: Another newbie
« Reply #1 on: March 01, 2014, 05:21:58 AM »
2shea..Hello and Welcome.

I did look up Tasmania, " A World Apart, Not A World Away".
]There was an article I had read about Tasmanian Devils and a virus or something that was affecting them?/i]  But, that is off topic.

Yes, I suspect the majority of us here had never heard of Sjogrens either.
Now it is part of our vocabulary.

You have a wise friend and it was great that you and your doctor pursued to issue, and that you have a Dx.

If you do a search on "saliva" you will find that it is much more than just watery liquid in the mouth.
Here in the States Drs. Dx "cholinergic agonist" such as Salagen, there are others, to stimulate saliva. This has also been shown to help with eye moisture in studies.

Saliva helps with digestion.. breaking down fats.
Sjogrens patients do not break down fats easily and that will add to gastro problems (deli meats, best to use pure fats in our diet .. and an anti- inflammation diet. Avoid salts, sugar.. drink plenty of water, then some more water. )

Saliva also acts to protect our teeth.
So the lack of causes problems. Increase dental exams and hygiene.

As a matter of course, we as a first line of defense are prescribed Plaquinel.

Keep us posted as to how you are doing.
« Last Edit: March 01, 2014, 07:51:22 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"


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Re: Another newbie
« Reply #2 on: March 01, 2014, 06:04:49 AM »
aha, touche of course, 2shea!

Welcome.  I'm sorry you have to be here, but glad you actually have a diagnosis, as that makes for validation.  I used to think treating the symptoms was the important thing, and in fact it is, in terms of health.

But there is a certain validation and peace of mind when there is a diagnosis.  I didn't learn that until this year, when I was 71.  Well I have a  had a few diagnoses, but mostly just 'idiopathic' things, which are unsettling both physically and mentally.  But the BIG diagnosis for me was Primary Immune Deficiency Disorder, which is the 'unifying diagnosis' which explains my entire health for my entire life.  That's a major confirmation to me.

So, keep us posted on your progress and treatments. 

Hugs and welcome again,  Elaine (Carolina)
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol


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Re: Another newbie
« Reply #3 on: March 01, 2014, 06:45:25 AM »
To 2:  Well now-you go to the head of the class.  My rheumatologist did not do the lip biopsy.  He is "the" sjogren's go to guy"  in our area and knew of probs.  Said it was not needed in all instances.  BUT YOU!  You knew the condition, you knew the diagnosis tools, you knew the problems, you TOLD your doctor.  Each time a newbie comes along so in control of their body, their lives (I know..I stole it) I am amazed.  Especially living in Tasmania!!  You are to be congratulated for being the most informed person here!  You are going to handle this syndrome quite well.  and...welcome to the board/group/club!
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene


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Re: Another newbie
« Reply #4 on: March 01, 2014, 07:07:56 AM »
Welcome to the board - you will find the members supportive, informative and kind. 

Glad you have received a diagnosis.  Plaquenil is the first line of defense as another poster stated.  Salagen or other forms of salagen are also used for increase in saliva and potential tear production in the eyes.

You are so very wise and informed already.  Keep us posted as to your upcoming appts and how you make out with them.

We are here.

Sending positive thoughts your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc