Sjogren's Syndrome plus more...

[beenthere]

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?

[Twinkletoes]

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.

[cat265]

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

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=068288

[Fran E]

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.




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?

[Jaspar]

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.

[Silverlady]

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.

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

[Barb249]

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?

[beenthere]

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

[bobtx]

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.

[LindaLu15]

[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

[BlueMajo]

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 ! :)

[Nannygoat]

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

[tingsdonwrk]

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:

[cyclelops]

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.

[hloutos]

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!

[geemarie]

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?

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:

[Tiger]

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?

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.

[jccgf]

Anyone have any ideas?

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/otherautoimmunedisease
http://jccglutenfree.googlepages.com/fibromyalgiachronicfatiguesyndrome

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.


I have outbreaks of blisters on my skin that sting and bleed.


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?
eMedicine on Dermatitis Herpetiformis (http://www.emedicine.com/DERM/topic95.htm)

Celiac Sprue Association on Dermatitis Herpetiformis (http://www.csaceliacs.org/DH.php)

University of Iowa DH photo gallery (http://www.lib.uiowa.edu/hardin/Md/dermnet/dermatitisherpetiformis23.html)


Also, gluten sensitivity is more common in those who have other autoimmune disease, especially autoimmune thyroid disease and type 1 diabetes.
http://jccglutenfree.googlepages.com/type1diabetesandautoimmunethyroiddisease

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/b12deficiencysymptoms

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

[cyclelops]

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)