Sjogren's Syndrome plus more...
 

Hi everyone, I'm 50 yrs old and have lived a full life with children, hubby and lots of work and family fun. I expected to live the rest of my life the same way, but I've been diagnosed with Sjogren's Syndrome - Primary. The Primary means that Lupus is not included in it (yet), but then why did the rheumy provide me with both pamphlets??? Anyway, I'm on medication for the Sjogrens. It is an autoimmune disease where your own body attacks it's mucus membranes and dries them up along with other organs such as your kidneys, heart and lungs. Sjogrens also causes "chronic fatigue along with extreme vaginal, eye and mouth dryness along with tooth decay because my gums are so dry and it causes acidic bacteria. An ANA Test decides this. I have a dry mouth all the time unless I take "Salagen" for it every few hours. I have a high amount of inflammation in my liver and kidneys and have to watch what I eat. I am on med for burning pain in my body and something for muscle spasms. I also have fibromyalgia which is complicating things along with Sleep Apnea and my SED rate is high (that's short for inflammation inside your entire body)! I've been like this since 2003. The Salagen causes problems with my eye sight and so does the pain med. The pain med causes dizziness and nausea, but does reduce my pain so I'm not in so much pain. I'm not hungry but I'm gaining weight!! I don't go one day without feeling dry, tightness in my muscles, pain in most of my body, and stiffness and pain in my joints along with sleepiness, but I can't sleep at night! Now after mental testing they've diagnosed me with Schzieoaffective Disorder (in other words they think a lot of my pain is in my head!), Undifferentiated Somatoform Disorder and Cognitive Disorder - Subtle (which means I'm in a low profile of those with a Cognitive Disorder). I have had sciatica pain since having a neuro testing done for nerve pain over six months ago. I'm having trouble walking, bending over and standing back up and using my arms to lift, open jars, bottles etc. I have no strength in my body to do much of anything and I used to do Swedish Massage before I got sick! I'm also on Thyroid medication for low thyroid but it's normal now. I have outbreaks of blisters on my skin that sting and bleed. I have "visions" which the doctors are calling psychotic episodes...then how come most of them come true? And now I have a very high level of emotional stress that is causing anxiety attacks. My doctor says we can keep going up on the pain meds...but then the side affects get worse and when I try to back off of them my pain gets worse. I can't think most days I'm in "Brain Fog" and I want my old self back!! I feel like I'm slowly dying. I'm in bed a lot of my days, I try to do household things but my energy level is so low, they call it "chronic fatigue". Some days I can't keep my eyes open even though I want to stay awake. And I'm getting very angry now after all this time. I've tried to be patient, most days just trying to do what I can, then I have days like today when I get angry and impatient...I ask God "how much longer Lord?" I've had MRI's of my brain and EEG along with numerous other tests and everything looks okay says the neuro doc. I've had MRI of my hypocampus and all looks good. I have arthritis in my C-6 (neck) and my L-5 (lower back). But nobody is treating me for these except the pain meds. I have a life but can't function in it! Anyone have any ideas?

Hi BeenThere! Welcome to NeuroTalk.

Sorry for all your health problems. I don't have any answers for you, but wanted to leave you a hug. :hug:

I hope you get some good input that will help you.

candida is worth looking into for any autoimmune disease. There is an intersting artical on lymenet.org

http://flash.lymenet.org/ubb/ultimat...c;f=1;t=068288

sympathy
 

I don't have too much to offer but want to sympathize with what you are going through. I too have Sjogren's and other issues and when the dr's don't know what is going on, they imply it is anxiety or in your head.... It doesn't help to have stressful physical issues and then start to wonder if you are crazy too! Best of luck to you.

There actually IS a common thread running through all your symptoms--inflammation. It is a shame that the doctors separate out "psychiatric" from all the rest of your problems since in my experience it is often the same underlying cause. Fix what is wrong to begin with. People with pituitary problems often are told they have "mental illness" for sometimes a decade before a proper diagnosis. The longer the stress of the underlying initial problem goes untreated, the more likely the brain is affected as well.

I agree with looking into Candida. I would add looking into the gluten connection.

I know the site is about children, but the list of resources (look for the link) on It's Not Mental (http://www.itsnotmental.com) may be of some benefit as it has a list of testing sites and articles on the connection between inflammation, stress, autimmune and brain problems.

In the meantime, I want to say I completely understand your frustration because I have both a female friend with your problems, as well as a family member with a subset of them. My female friend is thinking of joining a study being conducted by NIMH on treatment of Sjorgen's syndrome.

look at this...
 

I also agree, inflammation can cause problems with the nervous system, see this article: http://www.sjogrensworld.org/mandel.htm

I too suffer from neurological complications caused by Sjogren's Syndrome. I also have rheumatoid arthritis. I can sympathize with all your issues. Also might want to look at the forum at that same site.

Billye

I also have Sjogren's Syndrome
 

I was diagnosed a few months ago. I to have Sjogren’s Syndrome. I accidently found this web site and I’m in hopes to find someone that can help me make sense of all of this. I just finished reading beenthere’s story and I can honestly say not only been there but I’m still there. I never discuss my situation with anyone, I feel like they all think that I’m crazy. I’m so tired all the time I have become very angry. I have had people tell me that it’s all in my head and that doctors are just telling me that I have Sjogren’s so that I will shut up. They claim that it is not a real disease. I would have attacks off and on (about every three months) they would last about a week and a half. They passed me from doctor to doctor and my tests all came back fine. I checked into the ER on three different occasions and finally after my husband stood there yelling that something was wrong they began to run more tests. I have not even had a cold in 20 years. They finally found that my inflammation levels in my body were extremely high. All that I could tell them was “ I hurt” first I would say its over here (maybe point to my right side) then I would say it was over here (point to my left side) I had no idea that it was inflammation and really could not explain well enough to the doctor for them to understand. The last episode lasted for approximately two and a half months, Only my family members knew, I would continue to try and make it all day at work, I also have bouts of Brain Fog, Short term memory loss, nausea, extreme pain, lower back and sciatic nerve problems. I am now seeing a Rheumatologist and he has put me on Plaquinil and prednisone. They say it will be a few months before I notice a difference with the Plaquinil. Is anyone taking Plaquinil or know anything about it. I’m not sick at the moment but I find myself unable to work the way I’m use to. Absolutely no energy and if I do get a little energy and try to even clean my house the way I use to I usually end up paying for it for a few days. Is there anyone out there that can give me some insight on Sjogren’s?

Billye, thank you!! I got a lot out of the web site you listed. I'm getting a new rheumy!! and passing the info on along with printing it for my ref... thanks again. Have a Blessed Day!
Beenthere

My wife has RA and also the Sjogren thing. We fired two rheumies til we found a very compassionate guy that knew what he was doing. I can say that because it worked, but the truth is these docs just try stuff til it works when it comes to these autoimmune diseases. Anyway, my wife is a nurse and didn't want to go to Enbrel type stuff that would shut her immune system down. That other stuff that starts with an M made her real sick. So she was put on Sulfasalazine (sp?) and it worked beautifully! He said it is the most benign drug and is real cheap (why most docs don't use it, IMHO). Everyone is different but it put her RA completely in remission and gave us our life back. SED rate back to normal. It also got rid of her dry mouth symptoms...I guess that's the Sjogren thing. Her RA was caught before serious bone damage and no guarantees that won't happen. But there is nothing worse than watching your spouse suffer. Understand, too, a lot of praying went into it.

[QUOTE=beenthere;391917]Hi everyone, I'm 50 yrs old and have lived a full life with children, hubby and lots of work and family fun. I expected to live the rest of my life the same way, but I've been diagnosed with Sjogren's Syndrome - Primary. The Primary means that Lupus is not included in it (yet), but then why did the rheumy provide me with both pamphlets??? Anyway, I'm on medication for the Sjogrens. It is an autoimmune disease where your own body attacks it's mucus membranes and dries them up along with other organs such as your kidneys, heart and lungs. Sjogrens also causes "chronic fatigue along with extreme vaginal, eye and mouth dryness along with tooth decay because my gums are so dry and it causes acidic bacteria. An ANA Test decides this. I have a dry mouth all the time unless I take "Salagen" for it every few hours. I have a high amount of inflammation in my liver and kidneys and have to watch what I eat. I am on med for burning pain in my body and something for muscle spasms. I also have fibromyalgia which is complicating things along with Sleep Apnea and my SED rate is high (that's short for inflammation inside your entire body)! I've been like this since 2003. The Salagen causes problems with my eye sight and so does the pain med. The pain med causes dizziness and nausea, but does reduce my pain so I'm not in so much pain. I'm not hungry but I'm gaining weight!! I don't go one day without feeling dry, tightness in my muscles, pain in most of my body, and stiffness and pain in my joints along with sleepiness, but I can't sleep at night! Now after mental testing they've diagnosed me with Schzieoaffective Disorder (in other words they think a lot of my pain is in my head!), Undifferentiated Somatoform Disorder and Cognitive Disorder - Subtle (which means I'm in a low profile of those with a Cognitive Disorder). I have had sciatica pain since having a neuro testing done for nerve pain over six months ago. I'm having trouble walking, bending over and standing back up and using my arms to lift, open jars, bottles etc. I have no strength in my body to do much of anything and I used to do Swedish Massage before I got sick! I'm also on Thyroid medication for low thyroid but it's normal now. I have outbreaks of blisters on my skin that sting and bleed. I have "visions" which the doctors are calling psychotic episodes...then how come most of them come true? And now I L-5 (lower back). But nobody is treating

Well, first of all dear beenthere, a hug for you :hug:

Second, even when I dont have Sjogren's (or at least, I havent been diagnosed :p ) I share with you many symptoms: My eyes are dry as a desert, my mouth, my skin, my nose (so dry that it bleeds)... I suffer of inflammation in my hair follicles which hurts like hell and make me loose my hair... I have fibro, so, I have sleep disorders AND I have hypothyroidism... :mad: SO, I clearly understand your frustatrion and stress...

I would suggest treating symptom by symptom... you know, everything in this life need to be seen little, by little... Take your medicines. Take things that help you thing, by thing... like, drops for dry eyes, spray for dry nose, cream for dry skin, you know what I mean... That might help you with all the stress you feel.

Take care, and come here to find info and chat, that helps a lot too ! :)

Plaquenil
 

Hi -

Someone asked if anyone is on Plaquenil for Sjogren's? Yes, I am and I get a lot of relief from it. You know the piece of paper you get from the doctor to take to the front desk? I always look at the bottom to see what the diagnosis is for that day and my doctor uses "Mixed Connective Tissue Disease" and his PA told me that encompasses Fibromyalgia, Sjogren's, Mild Lupus, etc.

Also, this is funny and good news for folks who are applying for social security disabiity. In June, 2007 (I think) they accepted Sjogren's as one of the 50 diseases they accept. Wow! I thought to myself, someone on the board must have this or their wife! LOL

I too Know!!!
 

I was told by a Neurologist who kindly phoned after a brain MRI and a brin stem MRI IT ISNOT IN YOUR HEAD!!! It is in your Brain...mine is antrophing and I have many (lie a Christmas tree he said White lesions in the nerves...All He says could be the sjogrens. causing major MAJOR CNS problems...

So as I strugle along like the turtle against the Hare(life) I know that there is a REASON that I feel so bad.

Big Huggles and I pray you too find all the reasons you need!:hug:

I have a diagnosis of Sjogrens, but my blood is negative. My MSG is loaded with lymphocytes...too many to count. My ANA is >1:1280, as the machine didn't go higher. I have also been diagnosed with Mixed Connective Tissue Disease, and it has a specific blood marker RNP, and it is a separate autoimmune disease, not a mixture of a lot of them, altho the symptoms are mixed, as they are for all autoimmune disease. I do not meet the cut off for MCTD however, it is the highest of the different blood markers.

Undifferentiated Connective Tissue Disorder is when several diseases are present but none of them actually meet all of the criteria. That is probably the most accurate descriptions of what I have, but not all that helpful.

Hematologically, now I look like I have Lupus, with a high ANA and low complement C3. And of course, I had Lyme 15 years ago, and have many symptoms of Sarcoidosis. Gosh, who knows??!!

It is very hard to sort out these diseases unless you have the blood work that the rheumies want....however, many of the treatments are the same. I agree with the gentleman who says you have to try what you feel you can risk, and see what works.

I do have the crushing fatigue which really takes away your will to live. If not for a wonderful family and beautiful granddaughter who is the light of my life, I would chuck it. I can't do a thing I used to do. Obviously, the ANA shows major inflammation, and I am sore all over. Eyes and mouth are dry but the pain and stiffness with the fatigue is the worst. I do try to do things, and it always causes me to suffer beyond what is reasonable.

I feel for any one with these autoimmune diseases. There is some research out there to indicate that they could be caused by micro-organisms.

All I can offer you is empathy and understanding.
Wishing every one healing, or maybe just one good nights sleep.

Am in the same boat
 

f my life the same way, but I've been diagnosed with Sjogren's Syndrome - Primary. The Primary means that Lupus is not included in it (yet), but then why did the rheumy provide me with both pamphlets??? Anyway, I'm on medication for the Sjogrens. It is an autoimmune disease where your own body attacks it's mucus membranes and dries them up along with other organs such as your kidneys, heart and lungs. Sjogrens also causes "chronic fatigue along with inflammation inside your entire body)! I've been like this since 2003. The Salagen causes problems with my eye sight and so does the pain med. The pain med causes dizziness and nausea, but does reduce my pain so I'm not in so much pain. I'm not hungry but I'm gaining weight!! I don't go one day without feeling dry, tightness in my muscles, pain in most of my body, and stiffness and pain in my joints along with sleepiness, but I can't sleep at night! Now after mental testing they've diagnosed me with Schzieoaffective Disorder (in other words they think a lot of my pain is in my head!), Undifferentiated Somatoform Disorder and Cognitive Disorder - Subtle (which means I'm in a low profile of those with a Cognitive Disorder). I have had sciatica pain since having a neuro testing done for nerve pain over six months ago. I'm having trouble walking, bending over and standing back up and using my arms to lift, open jars, bottles etc. I have no strength in my body to do much of anything and I used to do Swedish Massage before I got sick! I'm also on Thyroid medication for low thyroid but it's normal now. I have outbreaks of blisters on my skin that sting and bleed. I have "visions" which the doctors are calling psychotic episodes...then how come most of them come true? And now I have a very high level of emotional stress that is causing anxiety attacks. My doctor says we can keep going up on the pain meds...but then the side affects get worse and when I try to back off of them my pain gets worse. I can't think most days I'm in "Brain Fog" and I want my old self back!! I feel like I'm slowly dying. I'm in bed a lot of my days, I try to do household things but my energy level is so low, they call it "chronic fatigue". Some days I can't keep my eyes open even though I want to stay awake. And I'm getting very angry now after all this time. I've tried to be patient, most days just trying to do what I can, then I have days like today when I get angry and impatient...I ask God "how much longer Lord?" I've had MRI's of my brain and EEG along with numerous other tests and everything looks okay says the neuro doc. I've had MRI of my hypocampus and all looks good. I have arthritis in my C-6 (neck) and my L-5 (lower back). But nobody is treating me for these except the pain meds. I have a life but can't function in it! Anyone have any ideas?[/QUOTE]

My mother suffers from the same horrible symptoms u describe. She says sadly that she feels her life is over. OMG what a thing to say, but the constant burning in most of her body has robbed her of the quality of day to day living. I and the rest of our family are very upset and very depressed about all of this. Is there any hope? Anyone out there with ANY suggestions? Please it really is a matter of life or death. Thanx!

I know how it is.....
 

I just wanted to say, I understand. Mine started a little earlier at age 44. One day I was fine, the next day I was ill and I have been ill ever since. It took along time to accept the fact that I would be ill for the rest of my life. Treatments for Autoimmune illnesses have left me with Diabetes as well. I no longer use any treatments that have severe side affects. I do use pain med when I have to and I practice relaxation. I also am a much more spiritual person than I used to be. I rely on God. There is a saying.."Life is about how you handle Plan B". Well, this is Plan "B". We can embrace life or just stop living. I don't believe that medical science really knows or understands our illnesses; much more research has to be done. I do not believe after this amount of time for me that I will get any better. I have to accept that and get on with the life I have. It is soooo hard. I am so sorry that you have so many problems. I hope that my experiences can help you in someway. I send you a hug.:hug:

Wow since it has been about a year since your post you may never see this. I feel compelled to respond as you are the only person I have ever heard of that has my same 3 main neuro problems. I also have High BP (controlled) and had to have a cardiac ablation and I have Mitro Valve Prolapse. I am probably headed toward my family's tendency of Type II Diabetees. However, the things that cause me the most problems are the neuro/autoimmune ones. I was diagnosed with Fibro about 10 - 12 years ago and Sjogren's 3 years ago. Sleep Apnea (yes - no -yes diagnoses) now with CPAP nightly. I have wondered if I really have Fibro or if it is Sjogren's only. How would you ever know and frankly I'm not sure there is a doctor that would. Anyone know of any good Rheumos in Alabama area? My meds are Zoloft 50 - Fibro, Atacand 16 - BP, Synthroid - minor thyroid level problems, Klonopin 1 - sleep fidgets.

The original post is almost a year old, but for anyone still interested in other ideas.....

If you have not been screened for gluten sensitivity, you should be!! Your medical problems scream potential for gluten sensitivity. The tests you need to request are antigliadin IgA, IgG. Just be sure they do not substitute a newer similar test, called anti-deamidated gliadin.

Gluten sensitivity is common in many autoimmune diseases... and may be the underlying problem for some with Sjogren's and/or fibromyalgia.
http://jccglutenfree.googlepages.com...oimmunedisease
http://jccglutenfree.googlepages.com...atiguesyndrome

In fact, one person who used to post as debinaz at BrainTalk years ago completely reversed her Sjorgren's disease by removing gluten, casein and soy from her diet... ANA antibodies back to zero, symptoms gone. Her doctor was impressed, and now screens all of his Sjogren's patients for gluten sensitivity and recommends a gluten free diet for those who are postive.

Gluten sensitivity is also associated with several skin disorders, one of which is a blistering rash called dermatitis herpetiformis. Has your dermatologist done a skin biopsy of the surrounding tissue to rule this out?






With all of these risk factors, it is definitely something worth considering. There is more information on diagnostics and other information in The Gluten File. You can scan the right bar from the homepage for topics of interest.
http://jccglutenfree.googlepages.com/home

You mentioned many other symptoms that are common in celiac disease/ gluten sensitivity... and please be sure that your B12 level is upper range. A lot of symptoms you mention are symptoms I had with a B12 deficiency.
http://jccglutenfree.googlepages.com...ciencysymptoms

Doctors often miss this, think low normal B12 levels are ok, etc. B12 deficiency is common, especially in those with autoimmune disease. This can all go together... and frequently does.

Tests for B12 deficiency:
B12 level
homocysteine
methylmalonic acid

If you take standard psych testing when you are physically ill, it will show somatoform disorder. Psych testing works on well people to some extent. I imagine some pain clinic or IME got you into the psych testing realm. When you answer the questions about symptoms, 'My neck hurts', etc. positively, it will skew your test to 'being somatoform'.

Now, since you have Sjogrens.....it DOES come with neuropathy and potential encephalopathy. Like Lupus, it can produce psychiatric problems via inflammation or vasculitis.

And they won't find that on MMPI (type of psych test)

I am going to bring this thread back to the foreground again. I have been in another forum for Sjogren's and I want to make things clear.

There is Sicca and Sjogren's.

Many, many drugs cause sicca. Dry mouth, dry eyes.

Among them are antidepressants, all of them. Benzodiazepines (during withdrawal too) , z drugs, antiparkinsonian drugs, diuretics, opiates.

If you are on these drugs, have negative blood work such as a normal ANA, normal ENA, and a lip biopsy is negative...look at the drugs. They should look at drugs FIRST before they do tests. It is easier to go off these drugs and see if things improve, than to go thru all that testing and have it come back negative.

Not all sicca is Sjogren's. Not all Sicca is inflammatory. Not all fatigue is autoimmune.

Many diseases come with sicca because sicca can be neurological as well as inflammatory.

When people seek to label their sicca as Sjogren's they do themselves a disfavor. They may not find out what the cause of the sicca is. I would hate to mistake SjS for amyloidosis!

I know what it is like to be anxious for a diagnosis, but, to be accurate, is what is most important.

Sicca is NOT Sjogren's. Primary SjS is worse than secondary SjS and the term secondary SjS should be dropped unless the blood work is +, because, all autoimmune disease can produce Sicca. Sicca is part of RA, Lupus etc. People with autoimmune disease already have the aching, the fatigue etc that come with any AI disease.

Primary SjS can make people very, very sick. Sicca is uncomfortable but not life threatening. Primary SjS can be.

Rheumatology needs to decide what is what....they have tried to classify autoimmune disease by the ENA, when it should simply be the ANA being +. They need to realize that many of the ENA do not define the disease. Only a certain percentage of people have the 'correct' antibody for their disease. However, at least elevated ANA, low complements, high sed rates, high CRP, thrombocytosis indicates inflammation. Without these markers, it is hard to assign sicca to an inflammatory cause.

Lip biopsies can show inflammation but it is not always SjS.

SjS diagnosis is a mess.

When I was discharged from teh hospital on Dec 30/09,, the Neuros that were attending to me said in there rellease narative,, that I had in the past been treated with ECT and also lithium,, now the lithium was dsomething that was treid back in 1986 when I had a severe anxiety problem,, but teh ECT,, I only agreed with that when I was admitted to the hospital back in 07 for severe numbness and burning throughout the body,, when EMG studies were conducted,, blood test run,, and everything came back normal,, I was approached in my room by the hospital shrink,, and was told that since nothing couold be found,, that iwas definately a somotaform disorder,, they asked me to stay in the psych ward,, at that time I said to my wife,, if theres a chance that I might be getting more medical trwatment,, then i will do it,, big mistake,, they tried to med me to zombie level,, then about the 4th day there,, they approached me about ECT,, me being naieve thought maybe in my head there is something worng,, so like a fool I had it done,, 5 times,, the last time after my release,, it was horrible,, left me feeling numb and lost to the world,, I try to forget about that,, but the problems continued,,
I went downhill from teh neuropathy,, I was getting sicker and sicker,, til we finnaly met a good neuro,, and a good rheummy,, who did the right testing and found the Sjogrens,, and also the SFN,,
NEVER go to a small town hospital that NEVER sees autoimmubne disease,, these people are absoulately worthless,, they might be good for stopping nose bleeds,, and treating below level 1 problems,, but drive yourself to the bigger cities to get the help you need,, you will get jerked around by GP;s,, you will get jerked around by local Neuros who deal with stroke victims,, but have little to no experience in AI Neuro problems,, or Neuro problems in general,, just remember one hting,, all doctors are called doctors,, regardless if they graduated at the top of there class or at the bottm,, choose wisely folks,, do not assume that since the guy or woman is wearing a white coat they kow anything

Living with Lupus, Sjogren's, Fibromyalgia & CFS
 

Hi Fran E,
Living with any chronic illness is a daily challenge. Although I don't experience some of your symtoms, I can relate and empathize with you on MANY levels.
You are not alone : ) Since life to me is such a priceless gift, I try to live with "the cards I've been dealt." Though each day presents new obstacles & many days I just don't even want to get out of bed, somehow my faith in God propels me TO GET UP - painful as that might be.
I know it's hard to be upbeat & positive when ANYONE feels so poorly. So,
I try to smile through the tears (though not always successful), and trust God for, "Just Enough Light For The Step That I'm On!"
I've been liviing with Lupus, Sjogren's, Fibromyalgia & CFS for years. Actual diagnosis was in 1981, but I believe it went undiagnosed for years.
I combine vitamin & mineral supplementation (after thorough reasearch on interactions with meds), along with following a trusted specialists recommendations. I combine natural & synthetic means to obtain my maximum
quality of life. I believe in researching everything that may be beneficial.
Natural supplementation has helped me out tremendously. But, what's good for one person may not be good for another. Research & being active in your own personal health problems is a VERY GOOD thing!
I could go on & on, but I'll spare you! I just want to ENCOURAGE YOU to hang in there & KEEP TRYING : ) Enjoy your good days & try to pace your activities. Best of wishes to you along your journey : )

Beethere
 

I'm sorry to hear your situation. I was dx with sjogren's too and osteoarthritis, osteoporisis. I make sure I drink alot of water frequently, use Biotene toothpaste, mouth wash and floss.presently take plaquenil. I USE over the counter refresh eye drops and sees an ophthalmologist. I WORK fulltime and try to be active although I get tired alot. I pray to God to be well everyday. pls don't lose hope. God is watching over you/us. pls do exercise and try not to be stress. Conditon gets worst when you're stress. Laughter is the best medicine. Get 2nd opinion from another Rheumatologist. take care. I'll pray for you.

Beenthere,

I too have been diagnosed with Sjogren's several years ago but have had medical problems for decades. **I'm just new to this forum, not new to this game;)**

Are you positive for ANA and SSA or SSB?

Although I'm sero-negative, my lip biopsy was extremely positive. Most of my problems are neuro related and I just found this forum. I wonder sometimes if the Sjogren's really causes the neuro manifestations or if the neuropathy (both AN & PN) cause the sicca...and destruction of the salivary gland. Which came first, the chicken or the egg :D

It most certainly is NOT in your head. If you do have positive serum markers or + lip biopsy, you might inquire about taking Plaquenil. It more about treating symptomatically for each system affected.

There is much more to be learned about Sjogrens and other AI diseases. They are ALL related in some way.

Hoping you feel better.

Even big cities can do this tho smaller can sure be a problem. I was diagnosed with Sjogrens in 06 and in late 08 I went to Mayo clinic for testing for myasthenia gravis and the neuro sent me a RHeumy consult. It was at 5pm. I was totally brain fried and was on mestinon which makes the Sjogrens WAY better. I didnt tell her half of what I was struggling with with the Sjogrens. They did knew blood tests and asked to see my biopsy slide from the university back home. They said no you dont have it mostly based on me not telling them all the miserable stuff and their blood test. So now the university who diagnosed me except for my pulmo doesnt include it anymore in my diagnosis! Sometimes no matter where you are being treated you have to get away from the old records. I saw a hemotologist who I had to tell I was on Paxil near 10 years ago and wow did her overreact to that. He without my permission called the shrink that prescibed it and it all ended up a giant mess. He had made his mind up just from how debilited I was and the paxil that it had to be the easy choice. He was very hard to talk to as he was very foreign so alot of what I tried to tell him got lost and I feel made it seem I was a weird/difficult patient. I had a reaction to IV iron which was the first strike against me as he wanted me to get 3 treatments of that and had no understanding how I could react to it.

I know that much could be done to make medicine better but for me my worst nightmare would be to universally have all medical records available to all doctors automatically.

Annie59

To All
 

I have Hashimoto's Disease and also dry eyes and can't clear the back of my throat. Endocrynologist said it sounds like Sjorgren's but I tested negative for it. However, Sjorgren's takes ON AVERAGE 6 1/2 years to diagnose. I understand that there may be a drug you can take to slow down the progression of Sjorgren's but my Rhematologist won't give it to me as I've tested negative. *edit* I've also contacted a Support Group Leader in my area to see if she might have any valuable information. *edit*

Hi BeenThere,

I've been there. I think you have Celiacs disease. If you have the money, I would go to one of the Celiacs centers. Doctors right now do not know much about Celiacs and it is a all encompassing disease - it isn't just my tummy hurts and I can't eat stuff with gluten, it's a great big monster of a disease. I was lucky and went to a great Mayo Clinic Endocrinologist that diagnosed.

I have all the stuff your talking about and more "Sjogren's Syndrome", epilepsy, celiacs, secondary adrenal insufficiency, dystonia (and a few others to boot). Gets you pretty sick. The Sjogren's Syndrome is just a lesser part of Celiacs disease. It's hard to find a good doc, people like us need neurologist, allergists, rhumatologists, endocrinologists and lets throw in a shrink for good measure. Be proactive and learn all you can, there are some great books.

I don't know if you can get a hold of me through here - I'm a bit hesitant to leave my email, but I sure wish I could share some of my story, trials and tribulations with you.

Hang in there. You're NOT CRAZY - you're sick.

Luvs!
Sue