New to Sjogren's

[AireScottie]

Hi all!  I just got my lip biopsy results back two hours ago, and it's positive for Sjogren's.  The test was done because I was recently diagnosed with small fiber neuropathy after 7.5 years of severe dysautonomia.  Haven't even seen the rheumatologist yet!  Any good tips or pointers for me?  Anyone else with peripheral neuropathy from Sjogren's?

[joycekatherine]

Just reading everyone's posts is so helpful!!  I have almost every symptom listed on this page...when I see the endo or rheumy I am going to ask for restasis & salegan immediately!!  My mouth is so dry it feels like a prune inside and when I have to take antibiotics, the dryness and the pain are almost unbearable!!  Welcome to all you newbies, this is a wonderful site with many wonderful people who are more than willing to help and listen!!  I've only been a member for about 2 weeks myself and this is the best site I have found online...good luck to all...

[AireScottie]

Yes, all my blood tests were negative, including the Sjogren's antibodies.  My sed rate and C-reactive protein have been elevated for years.  I had a lip biopsy to confirm the Sjogren's.  I'm pretty tired right now, so I'm going to cut and paste my symptoms from another message and send a message to you.  I've tried to think of as many as I can, but if you've got any that are not listed, message me back and I'll let you know if I just forgot about them.

[cudagirl]

I was diagnosed by lip biopsy and all of the serum test were negative....

[laaz]

Hi-  I have heard that a person can have Sjrogens disease and still have a negative ANA test - do you know if this is correct?  What exactly were or are all the symptoms you have with this autoimmune disease?  I have dry eye, meiobian gland dysfunction , constant thick post nasal drainage 24/7. I was diagnosed with immune mediated small fiber neuropathy.  I had a severe bout of the flu  7 yrs. ago - ever since I have had all these symptoms.  Arms, legs, scalp, back , face etc. have abnormal sensations.  Tingling, buzzing, water running sensation etc.  I am at my wits end and don't know where to turn.   Please try to answer my questions.  How did your symptoms start? Do you have any problem with constant thick post nasal drainage?  Dry eyes?  What symptoms do you have with your small fiber neuropathy?  Sorry so many question, but I have had so many symptoms for 7 yrs. and  no treatment helps and I really don't think I have a total correct diagnosis.       Awaiting for some answers ----Take care       Laaz

[freesubaru]

I have severe sjogren's and it has caused peripheral neuropathy in my feet , lower legs and hands. I don't think there is anything autoimmune related that you can not experience with sjogrens. The neuropathy has stopped progressing and has been less of a problem the last year or so since I started taking placquenil and prednisone. I also use restasis and punctual plugs in my lower tear ducts that have helped with the dry eye's, but otherwise the only symptom reduction i have experienced has been brought about by activity reduction and sun reduction.

[bender62]

Hi, thanks for your reply AireScottie!  I have tenderness at the back corner of my jaw, don't think there is swelling.  I am happy about that!
I have done a little Yoga in the Past...not that flexible right now.. I am working hard and in a good direction keeping my health in tact. In September my Rhemy wants to start me on something. Right now we are on the watch and wait.
She did give me a prescription for a pill Salegan...for increasing my saliva.
.  I hope you have a wonderul weekend! kathy

[AireScottie]

Howdy!  Well, don't feel too bad.  I just had a Rheumy at one of the world's best hospitals tell me it wasn't a serious disease, just an annoyance, and it wouldn't affect anything serious like liver and kidneys (wrong!).  I said, "But it's destroyed a bunch of nerves!"  She also didn't understand that it can affect joints or central nervous system.  I'm trying to decide how to tactfully report her incompetence to the department, because that's just unacceptable!

However, when I followed up with the neurologist, she said I have a great chance of  nerve recovery with treatment (Plaquenil) and that the main thing is to start treating it ASAP in order to avoid damage to liver, kidney, or central nervous system.  Pretty sure it already got the joints.

Ice picks in the feet is a classic sign of peripheral neuropathy.  There's a really good page here on MedHelp:
http://www.medhelp.org/medical-information/show/74

Do you have any swelling under your chin or at the back corner of your jaw?  I guess not everyone gets it, and it's good if you don't.  I've read that it makes a person slightly more prone to develop lymphoma eventually.  

Have you thought about Yoga or Tai Chi?  I started Yoga when I was 8, and it has kept me on a very even keel emotion wise.  I can't practice any more because I pass out so often, but it has given me a totally different outlook on life.  My mom's a huge worrywart, and she improves drastically when she remembers to practice.  Maybe it's not your thing, but I just thought I'd throw it out there.  Obviously it doesn't help the autoimmune part, or mine never would have developed, so don't let anyone tell you it's a cure-all.

So are you starting treatment soon?

[bender62]

Hi, I have Sjogrens and Fibromyaligia....the last few nights I have read so much about Sjogrens on this internet that I'm starting to get worried of the future. When I went to my Rhemy last Wednesday I told her that I was glad it was not a serious disease and she said it is a very serious disease that needs to be looked after.  I had no idea until after I've read so much stuff. Now I'm scared because I know stuff has been happening to me for quite a while...probably years really.  I have 1:320 ANA, 600 RF SSLa SSRo and high ESR 25...SS has been progressing for 2 years now after diagnose.  I thought it would stop by now and go into remission.  I have not had the large swelling of the glands...do you think that happens to everyone eventually?  I also suffer from Terrible Anxiety which I think has gotten worse because of SS and Fybromyaligia...among other things .    I'm not sure what perpherial neuropathy is...I know my feet hurt sometimes...like ice picks or electric shocks when I walk... I'm still learning about all this.  I hope you feel better..

[joycekatherine]

Looks like it's the gift that keeps on giving!!!  ;)

[AireScottie]

Salivary swelling has been added to the list.  Hooray!

[AireScottie]

It took me a while to start the tracker too, but I realized it's really good to print or email for your doctor.  They never believe things you tell them, but somehow when it's written down on paper it becomes legitimate!?!

I have lost most of my friends because they're all super active and thought I just wasn't making enough effort or weren't willing to adjust their lives at all to accomodate me.  The best reaction was my primary care doctor, though.  Sjogren's has destroyed more than 95% of my small nerve fibers, and I thought he was going to pass out when I showed him those test results.  He knew I was sick, but I don't think he ever imagined it could be really serious or life-threatening.

[joycekatherine]

I haven't gotten into the tracker thingy yet, but, I'm sure it will be a great help...thanks scottie...
cudagirl, you are too funny!!!  I told my daughter and her best friend who is like a daughter to me, when they find out what's wrong with me, I want you both to apologize for all the times you laughed at me because I was physically challenged!!! lol I love that...I told you I was sick!!! lollollol  we all need to keep a sense of humor...laugh so we don't cry...

~joyce

[cudagirl]

Awesome...We need that tracker.  Mine will pop out over night.  I started keeping a journal of when I tend to flare, just so I can see if I have any triggers.  A tracker would be great for that....Thank you!

I know it is hard not having a support group of family and friends.  People just don't understand what these diseases do to our bodies until you have a flare that almost claims your life.  My family never understood until I was hospitalized.  My husband was always wonderful, but his family were jerks to me until then.  I used to joke and tell my husband I wanted the words..."I told you I was sick" on my tombstone.  Just some sick humor LOL!

Hope you start feeling better soon!

Pam

[AireScottie]

Thought you two might like to know I asked MedHelp a couple weeks ago to add a tracker for salivary gland swelling (low, med, high) to be added to the autoimmune tracker.  They said they will do that.

[joycekatherine]

OMG, I can't believe you have 3 autoimmune diseases!  I'm so sorry...that must be so hard for you...I also have diabetes, type 2...it's hard enough dealing with one chronic illness...I thank you so much for writing back to me and your info does help!  Airescottie...I look like I have 3 double chins at the moment also! I have severely dry eyes and mouth and carry water with me everywhere I go...the fatigue is awful, just taking a shower, shaving my legs and washing my hair is exhausting!  I am also having some thyroid issues, just had a biopsy of a mass on rt side...it's not cancer, thank God!
I think the worst part of being ill is when you don't get any understanding from those closest to you...that hurts...I appreciate you BOTH answering me so quickly...if you have the time, please feel free to read my journal entry...where I have told most of my story to date...any comments, etc. are very much appreciated...I think I've come to the right site... ~Joycekatherine

[cudagirl]

AIP is Autoimmune Pancreatitis....it is very rare, and mimics cancer.  I have only found one other person with it on this site.

[AireScottie]

My submandibular salivary glands have been swelling on and off since 1996.  I pointed it out to a lot of doctors and can't believe it took until this year to get a diagnosis.  It looks like I have a double (or triple) chin when it happens to me, like I've suddenly gained 40 pounds overnight.  I too have been having increasing fatigue, and it's always much worse when the salivary glands are swollen.  I'm hopeful this will improve when I start taking an immunosuppresant.

Cudagirl: what's AIP?

[cudagirl]

I am so sorry that you are not feeling well.  I understand completely what you are going through.  Hopefully this site will give you some needed information and help. Welcome!

I started having salivary gland swelling 2 years ago.  Mine started in the submandabular glands, right under my chin.  They didn't hurt, so I didn't pay it any mind at first.  Within a week they were the size of golf balls, and stuck out of my neck and chin.  My kids were worried because it looked like I had more neck than head.  About 2 weeks later I started having bad abdominal pain, and with a CT scan they found that I had AIP.  AIP is a disease that goes along with SS disease.  With a LOT of steriods my swelling went down in my pancreas and neck....then it went away all together.  I was fine for about a year, until this Thankgiving and it came back with a vengence.  I have been on steriods and Imuran since then and just now am I starting for feel a little better.  I get a severe dry mouth and eyes...I have to pry my tougue from the top of my mouth with wet Q-tips.  I had bad lung issues this time. My joints hurt, and I get fatigued easy.  It is not just a tired feeling, but a complete exhaustion...I have to lay down or fall down, if you know what I mean.  I have 3 autoimmune diseases.  Lupus, Sjogrens and AIP.  With treatment you can live a fairly good life, as long as you stay out of the flares.  This one has lasted longer than I hoped for.  I am currently trying to get SSDI because I had to quit work.  

I hope this info helped a little.  If you find out you have Sjogren's, don't worry.  It is very treatable.  Take care and good luck!

Pam

[joycekatherine]

I was reading your response to another member and you said your salivary glands were huge...
I am having that same problem in my Parotid gland and I also have dry eyes and very dry mouth...I have suspected for
quite awhile that I have Sjogren's because I have almost every symptom on the list...also just had
a biopsy of my thyroid, have a mass on it and it's enlarged, and I was reading on this site that
thyroid problems can be autoimmune and that autoimmune runs in twos, one primary and the other
secondary...would you mind elaborating on your "huge salivary glands?"  OMG, that sounds so funny, but, it's not
mine hurt like HE double hockey sticks!!!  Appreciate any enlightening you can do!!
Thanks,
joycekatherine   I'm a newby to this site
ps I tried to send this directly to you, but, I don't think it went

[AireScottie]

Thanks for the welcome!  I already had all the autoimmune tests looking for the cause of my neuropathy, so I know I'm okay there.  I have a genetic connective tissue disorder and I'm really suspicious Sjogren's runs in the family.  My mom and most of her 7 siblings have dry eyes, nose, mouth, which is why I thought nothing of it, and one of her sisters has had lymphoma.  Needless to say, I really want to know if the lymphoma was the Sjogren's type!

[cudagirl]

Bless your heart...Welcome to the world of Autoimmune diseases.  Luckly you found out now, so you can be treated.  Don't be surprised if your Dr runs a load of test.  Sjorgren's is usually a secondary disease, so they will want to see if you have something else as well.  I have not had the problems you describe, but I have had some really hard stuff.  Mine causes severe dry eyes, and mouth. I have had lung problems, heart problems and serious digestive problems.  With treatment all of these have been relieved.  I have Lupus as well.  They just found out I have SS last Thanksgiving.  My salivary glands were huge.  I am still on prednisone and will be for about another 2 months.  I also take Imuran, and plaquinel.  The best thing is to get into a Rhuemy and get started on treatment.  Good luck, like I said with treatment you should do well.