Just curious!!

[KATIEB0612]

Hi there, some advice or personal experience would be appreciated here, not yet diagnosed but trying to do my homework so as not to be fobbed off, have the positive bloodwork, but not many of the typical symptoms ie dry eyes, muscle and joint pains, but i do however get a dry mouth and lips, my question is, with sjogrens once the dry mouth sets in, is it constant or does it come and go, my mouth and  lips are feeling very dry but it does come and go. I don't think my mouth is dry due to lack of saliva as i have  plenty of saliva, was just curious whilst trying to find out what is wrong with me. I have been diagnosed with M.E and i have quite bad anxiety issues, prob is they have very similar symptoms grrrrrrrrrrrrrr i just want to feel well!!!

[navydad]

Hi there, some advice or personal experience would be appreciated here, not yet diagnosed but trying to do my homework so as not to be fobbed off, have the positive bloodwork, but not many of the typical symptoms ie dry eyes, muscle and joint pains, but i do however get a dry mouth and lips, my question is, with sjogrens once the dry mouth sets in, is it constant or does it come and go, my mouth and  lips are feeling very dry but it does come and go. I don't think my mouth is dry due to lack of saliva as i have  plenty of saliva, was just curious whilst trying to find out what is wrong with me. I have been diagnosed with M.E and i have quite bad anxiety issues, prob is they have very similar symptoms grrrrrrrrrrrrrr i just want to feel well!!!

The course is different for everyone,, my eyes went dry overnight,, the mouth soon followed, that was back in 07,, if you have the Positive bloodwork,, its hard to say ,, is the house pretty dry,, ? and dont let the anxiety tag get in the way,, who in hte world would not have anxiety when you dont have a clue what your body is doing to you on a daily basis,, for me its just been a progression,, all downhill, for the past few weeks my mips have been very very dry, water doesnt help,, nothing helps,, if you have plenty of saliva,, thats good,, means the salivary glands havent dried up yet,, When they did the salivary gland test at Mayo,, mine showed reduced uptake,, of the stuff tehy use to test them,, some kind of radioactive stuff,, but not enough to say i Had SS,, becasue I dont meet all the criteria,, All I can tell you is try to keep hydrated,, no colas,, stuff will dry you out worse

[Shani]

Hi Katie.

I find that we have periods that our dry symptoms are less worse.
Most of the time when it's really hot my symptoms worsen.
Or in the winter too, when it's very cold and windy.

So the dry mouth, eyes comes and goes.
There are days when you feel like you need to moisture them less than other days.

I got my diagnosis through a Salivaglandscintigraphy it's a scan the measures how the saliva glands function.
Less painful that a lip biopsy which is also an option if you are seeking a diagnosis.
Or the Schirmer test that is done by an Opthalmologist to meausre you tear production.

Hope I helped, hugs and love!

[Carolina]

Dear Katie:


Auto immune conditions seem to have a huge list of possible symptoms or co-conditions that may or may not accompany the diagnosed condition.

In other words, two people may have very different problems with the same diagnosis.   And some problems do seem to cycle, rather than remain constant or gradually increase.

I've heard of people diagnosed with Sjogren's and then it has gone away!   I read about that here on a post in fact.

Generally, however, that doesn't seem to be the case for most people.

In addition, the treatments that are available are not always successful for every person.  Some treatments help, some do nothing,  and some are worse than the condition being treated.   There is a lot of trial and error..... with changes over time within the person being treated as well.

Most doctors, even Rheumatologists, have a hard time with the Sjogren's family of auto immune diseases.  Nothing is neat and tidy.  doctor's like neat and tidy.

I don't know what M. E. is.

Keep us posted.

Kisses

Elaine

[KATIEB0612]

Thank-you Navydad for your reply, i am just so confused about it all. The doctors haven't given me an anxiety tag, it is me i know i get anxious and have done for many years, my blood work is positive but i think at the very low end, I have also been diagnosed with chronic fatigue syndrome, but i guess many people here may of had that diagnosis at some point too. the rheumatologist i saw has said she doesn't think that i have sjogrens syndrome as i do not have the dry eyes and plenty of free flowing saliva. I just get frustrated as i have spent the majority of the last 2 years bedridden and until i have a firm diagnosis i don't know what direction to head in.  I am sure you and many others on here have been or are in the same situation, that is why i really appreciate personal opinions thank you xxx

[KATIEB0612]

Thank-you also carolina and shani for you replies, i seem to find so much more information and support on here than from the doctors xxx

[Patze]

Hi Katie,

Like the others mentioned, there is nothing cut and dry about SJS or any AI for that matter (very frustrating).  There are some members here that don't have any symptoms whatsoever and have the positive blood markers, while others have a ton of symptoms and are completely sero negative (along with the lip biopsy).  I know that I'm lucky as the rheumy I see is treating my symptoms without a positive blood test, period.

I can't say if you have SJS, nor can I say you don't, and unfortunately some doctors are just not well versed of them either.  Can you get a second opinion from another rheumy maybe?

I notice that you mention your anxiety, and though you're being treated for CFS, what does your primary say about it?

Hang in there and sending you some soft

( ( ( ( ( H U G S ) ) ) ) )

and I hope that you start to feel better soon -

Patze

[deeindiana]

Hi Katie,
Mouth/throat dryness, pain and sores are my main problem too. Although I always seem dry overall, it tends to come and go for me. There are times when I can almost forget I have SS. Then, it will flare and my taste buds will get very ragged (like little tags) and horribly sore. It feels difficult to swallow and I get hoarse. I think I also have Burning Mouth Syndrome from inflamed nerves (you can look it up to see if you have any symptoms). Must confess: when it all flares up I get anxious and worry, "Will this be the time it doesn't go away?". But, so far, it always has.
I hope you feel better soon!
Deb

[Carebear]

Hi Katie,

As my doctors have explained to me, Sjogren's is complex, unpredictable, and different for each patient.

That's why it often takes 6 to 8 years for a diagnosis from the onset of symptoms.

[KATIEB0612]

Patze, my Gp isn't really fully aware of my level of anxiety and how much it affects me, i have told them a little more lately so i can make sure i get the right treatments from all areas, she has suggested some anti-depressants as she says they can sometimes help energy levels for people with chronic fatigue and they may help the anxiety issues as of yet i have not tried them as they scare me, i already feel so ill, i am not sure i can handle it if they cause me any horrid side effects. For M.E there is not a great deal they can do for it, i get B12 injections, as i had a b12 of 108 when diagnosed the standard treatment is injections every 3 months, but i got my doctor to write an M.E specialist as i had read that m.e patients can benefit from monthly b12 injections which was agreed. i have just started seeing a neuro o/t who comes to my house and after christmas i will be seeing a psychologist from the community neuro team. so i do feel i am doing all i can in regards to the M.E/CFS diagnosis and i guess what ever is causing me to feel so poorly, will be helped by the services i am currently being provided with, but it is just so frustrating not knowing for sure x

[Patze]

Hi Katie,

I'm glad to see that you've taken the bull by horns and have a good team of health care workers set up, lucky you!

Hang in there, take care of yourself, and keep us updated, okay?

Patze