details about ur experiences from sjogren

[elirene]

Hi from troubled Athens,

Let me describe my own case and then i would be pleased if you say me your opinion and experiences about sjogren..
I had throat problems since july, severe pain inside the throat and the left lymphs..on november i entered the hospital they said infection of tonsil ( false) and i left hospital with severe pain..a symptoms accompanied pain was the dry mouth n throat but throat was my essential problem..
i leave hospital, i see a few days after my tongue changing doctors said its ok, on december i did hiv test, syphilis, hepatitis,it was negative..
on january i make the ana test, test of pharyngeal liquid and general..also test for chlamydia and herpes..pharyngeal liquid was normal and the general blood test except lymphocytes that were 19 (25-35)..
ana test was 1/320 high and ro ssa slightly positive..
i go to audiologist again said pharynx infection took drugs and had all the negative effects like diarea, red spots on the skin etc..
the pain the same then went to other audiologist and said stomatitis, i felt better with the drugs he gave me
last week i went to reumatologist and said it is sjogren but it does not affect the throat so much..
now i feel horrible i feel im very sick, i have gingivitis too
i examine my throat and mouth every day and any difference make me very anxious..
i ve startied to doubt about hiv test result..but i didnt have any risky relationship 10 weeks before the test and this case was with condom except oral..
does sjogren makes these symptom i feel horible tell me about ur experiences please i feel hopelesness
i dont know what to do i go from doctor to doctor and every day i experience new symtpoms my anxiety is on the top..also i ve bought the vaccine gardasil for hpv, im afraid of doing it now should i do it?may i have more side effect due to this autoimmune disease?
at the end of the month i ll make again the test for autoimmune diseases and take biopsy from the lips..

[eye2dry]

hi Elirene.

I have never had any throat pains, I don't even have any tonsild left. I have had ulcers on the side of my tongue once in a great while..which I believe can happen with SJS.
Have you taken any medications recently that can give you oral yeast infection? I did get that one time with large doses of prednisone in the beginning with my SJS experience, the rheumy gave me diflucan a pill...cleared it right up.
What all blood work have you had? Do you have joint pain? fatigue? dry eyes or dry mouth?
I feel bad for you and I know the feeling when you worry about your health and want to know just what is wrong with you.
Your kind of early into this thing...may be awhile before you get a postive answer on if you have an autoimmune disease, like sjogrens. Some people I hear wait many years.
I hope you do not suffer much longer. Maybe someone on here can offer you some guidence...I know just saying "hang in there" sounds trite.

eye2dry

[MissyLouWho?]

Hi Elirene and welcome to Sjogren's World!

I am still figuring out my experiences with Sjogren's.  Still connecting the dots.  My throat issues are things like dry, tacky and sometimes stuck together in the morning.  My mouth isn't dry, but my tongue is.  My eyes are very dry and I can't wear contacts anymore.  I have to put in drops or yawn and get my eyes to water so I can open them and see.  My joints ache, muscles ache a lot, and my muscles feel exhausted for no reason (even after a nap).  I also will feel like someone poured a bucket of 'tiredness' on me and I can actually feel it roll down my body.  I forget what I am saying half the time and can't find the right words 

My neurologist told me about something called 'conversion disorder'.  It's where you have lots of symptoms that are real (you don't imagine you're sick, you really are) and they are caused by anxiety.  In essence, you actually worry yourself sick.  So you need to try to hang in there and not get too worried or you can make yourself worse.  But....they won't give you positive ana or a positive ss-a result.  I think you should stay on top of your doctor and make sure he fully checks your body and your blood thoroughly.  Lots of blood tests.  The root of the problem can lie somewhere far from your throat and just seem to be from your throat.  For example: my big toenails turn blue often but the reason that they do that is my heartbeat slows down too much and doesn't pump enough blood to my toes, which are the furthest part of my body.  It could just be the way that whatever is brewing is manifesting itself in your throat.

Feel free to read the articles and posts here to get some insight on everyone's dealings with Sjogren's and other things. 

Take care and let us know what you find out.

[Joe S.]

Elirene,

Welcome to the forum. The basic symptoms are dry eyes, nose mouth, bum (for the non-Americans). Thrush, gingivitis, and tooth problems are common among people this ailment. It took years before a doctor said SICCA to me.

1.   Don't Panic. Panic makes thing worse than they are or have to be.
2.   As long as you live remember to breath.
3.   Meditate "I am", "calm" to help with pain management.
4.   Sip, Swish, and Swallow your water.
5.   Wear your "polar fleece mumps scarf" to bed.
6.   Read "Spoon Theory" to manage your symptoms.
7.   Brain Fog goes with AI diseases and there are supplements for that.

We tend to get infections in our glands and teeth. Strep is a recurring throat infection for a lot of us. Cytomegalovirus (CMV) is another common virus that we get. Some of us encounter Staph infections also.

I take: Omega 3, D3, C, B12, Magnesium, and a glass of Carrot juice every day for my general immune system support, health, and pain management. I take these supplements to help me fight the autoimmune diseases R/Alpha Lipoic Acid, Aceytl-L-Carnitine, PQQ, Co-Q10, and Biotin. Please check with your health care professional before trying any of these supplements. Also Check for any drug/supplement interactions and side-effects.

I am now hiding from the sun most of the time due to Sjogren's. With the help of others on this forum I thing I have figured out a health challenge that I have had for decades that is triggered by my Fibromyalgia. I do take other supplements/drugs for diabetes and Rheumatoid Arthritis.

[season]

I sometimes have throat pain and it can be very scary. It is hard to describe but when it happens I try to drink some liquids and it does get better.

I hope you are feeling better soon.

[elirene]

Thank you very much for the support,

The truth is that anxiety is the worst advisor!
The reumatologist examined very well all the body and said that it has autoimmune signs such as livedo, cold hands and legs.. the tongue and pain on the left hand
it can be explained by sjogren cause dryness is evident only in the mouth but throat (pharynx) makes me feel horrible and as i examine it every day from last week i see sth different such as infection or i dont know, i visit doctor once a week, i feel ill get crazy..
also except from health anxiety , the events in greece make me so frustrated and anxious cause we werent used to live in such way watching everything to corrupt..

[elirene]

Im very sorry for all this happening to you,
me im 23 yrs old, fortunately i dont have problms with drugs but i smoke. I used to smoke many cigarettes but now with this problem i smoke less than 10, about 7-8.
now it is stuck in my mind that i may have hiv..but ive done the test..i thing im mentally sick..
also as i said i have to make the vaccine and im so afraid..cause when the audiologist said i have infection on pharynx i took 2 antibiotics, fragyl and vibramicyn and i had all side effects.
i have to mention that audiologist said there was infection or tonsilitis and the diagnosis was false cause pharynx was fine, so i think and the last audiologist said.. the only i had was stomatitis from antebiotics..so sjogren was the cause of pain i suggest..
im lost i dont know i ll do again ana and ro ssa test..

[elirene]

I think this forum is the only place where people understand what i feel..cause they have similar experiences..
the truth is that 2 years before i had severe problem with reflux that passed away with antidepressants..so im very prone to psychosomatic diseases..
jackless22 should i repeat the test for hiv, could be false negative?do you have low lymphocytes in your general blood test, me i have low but doctors say its nothing..
i have to calm

[lea78]

My experience with sjogrens, is I started with neck pain at least 2 years ago saw quite a few doctors, then started getting facial pain. I eventually had MRI scan which showed pain was caused by imflammed salivary glands.
The dry eyes soon followed. It was my dentist who recognised my symptoms and sent me to oral surgeon.


I also have anxiety which is hard to deal with, and I have been to doctors that much, I now don't like going. Anxiety seems common for people to have, I have it in spells and can be fine for weeks.

[elirene]

me too , i had neck pain but the only the found was lymphs enlarged, do u have throat pain too>?

[lea78]

Hi, no I don't have throat pain, it sometimes is dry though. My neck pain was ongoing for about 18 months and only flares up now and again now.

[Joe S.]

There are some good exercises to help you deal with anxiety in the book "Feeling Good" by David Burns.

[elirene]

salivary glands r parotids?
on november i chekced organs on the neck and were fine..
only lymphs were enlarged but less than 1 cm
thanx joe
can i download it? although my mother lang is greek ill try to read it

[lea78]

Yes its my partoids that swell, and mine are painful when I eat, this is not constant it just flares up.

I have the book Joe mentions, in fact I have re read some of it this morning.

[Leli]

I went to Disney in Nov 2011 and came back a mess.  Went came home with an imflammed knee, thought it was Lyme treated me with Doxy, Lyme test negative did ANA- positive then SS-B was positive.  Since then my face is numb on my left side, my eyes are dry, my tongue hurts, my feet can be tingly and ears feel clogged.  I have had sore throats but I also have had allergies my whole life.  Im not that tired, and dont have fatigue but again for two months i have not been myself.  not sure wht triggered it but Im miserable and just want to start taking something to feel better.  I hope your throat feels better.  Im glad i  found this site:)