i went into the docters over a year ago because i can actually see the one swollen node behind my left ear,(left mandible)since then, i have had 2-3 ct's and pet scans,( which revealed bulky adenopathy in right axilla that was suspicious, and multiple nodes in neck) a needle biopsy, and axillary node biospy on the right side, (2.5x2cm yellow to pink lymph node) the final diagnosis was, reactive lymph node with follicular hyperplasia, no evidence of lymphom, hodgkin's disease, granuloma or metastatic malignancy. after all this, i am now being sent to a rheumatalogist because the oncologist thinks imight have sjogens syndrome after having my blood tested. i dont see how i have sjogens syndrome, when it involves dry eye and mouth, i dont have any of those, but i do have eczema. please help!!!!!!!!!
Last edited by linda82; 08-05-2008 at 06:50 AM.
My opinion from reading and having primary sjogren's is it attacks your moisture glands throughout the body. You might not have the dry eyes. I always thought as the doctors did I just had allergy eyes occasionally and asthma but the sjogren's has apparently attacked my lungs first for years.......I also had other symptoms that were blamed on other issues.
For over 4 years I have had fatigue and they blamed it on the medicine I had to take to control an irregular heart beat. The fatigue is from the sjogrens.....I had back surgery in 02 and picked up an infection from the hospital, ever since I would have vaginal dryness which would bleed...it was painful, embarrassing and very confusing because I didn't know what it was, I had a complete hysterectomy in 96....3 gyns and other doctors would not even talk about it. They would just send me home feeling awful. Would you not expect them to know about this problem in women.
Last summer I went to a specialist at a top hospital who told me it had collapsed from lack of estrogen, it was a freak show......well guess what one of the symptoms of sjogren's is when you go to any of the qualified sites. Vaginal dryness.. mine was just severe and they didn't even know what to do, different parts of your body might dry out on you not just your eyes.
So be your own advocate, read all you can so you will learn and then ask your doctor qualifying questions.....and don't stay with the doctor if you think they aren't competent in treating you.....good luck
Gcb n Pgh, can you share with me how the sjogrens is affecting your lungs exactly and what you do for it? Is it the asthma or does it feel different? I have secondary sjogrens (extraglandular) and have been having trouble with my lungs. At times it is very difficult to blow the air out. Other times I cannot take a deep breath all the way in. It feels like inflammation to me but the only tests that come back irregular are my MIP and MEP so the doctors are of little help. Most all of the sjogrens books talk about the fact that sjogrens can affect your lungs, but none really go into how to treat it. Do you have any suggestions?
I am new at this myself since I was only diagnosed in the Spring.
Since I was in my 40"s I have spent the winters with constant bronchitis and pneumonia. I could inhale but not exhale all the time they said I had asthma. Late 40's I started with coughing (never smoked) and was diagnosed with COPD...I find pulmonary doctors to be useless. One year I would cough, go unconscious repeatedly for over 6 months. I was in the hospital 5 times.....3 separate hospitals and pulmonary doctors and no one could help. They said I must have some unknown virus.
It went away on its own. Last December, I started with a similar bronchitis and cough. No one could help me. And I slept like I was in a coma.
As I said before I have to take this medicine called lopressor for my heart now since the infection I picked up from back surgery in 2004 which I thought gave me the fatigue. I went to a new cardiologist because the old one wanted to do another heart cath to see if something else was causing the fatigue. I wanted an MRI so I changed doctors.
This heart doctor didn't like the way I was breathing so he ordered a Ct heart and lung scan. Well, my heart is fine but they found multiple bilateral nodules on both lungs. Something new to worry about but what causes them.....they can be benign but you have to have the scan every 6 months to see if they grow then its a new issue.
But I am still sick and the pulmonary gives me advair again and sends me home.....I go to another one....he wants me to get on a tread mill for an hour and 1/2 to check my oxygen....not an option...I can't walk across the room..
I go back to my pc after all the specialist and tests, he can't help me.....so I sat there and cried....first time ever....I am 56...I told him he had to help me...I had to get back to work. someone had to find what was wrong.
He looked at me and said there was one more test he could try.
He called 3 days later to say I had Sjogrens. I went to an Immunologist, who said.....I don't think you have sjogrens, you don't look like it....I want to do my own blood work...okay.....4 days later he called.....yes, I definitely have it. This doctor took the time to get all my back records because my liver enzymes were high.They have been high for years he tells me, didn't anyone ever say anything, I tell him "no"..He sends me to another specialist for the liver......The liver doctor says.....You look fine to me, I don't think you have any liver problems but we will do a liver biopsy.......well.....I have cirrhosis....
For over 10 years I went to a endocrinologist for hormones and every 6 months she did blood work. She must not have looked at it......
So I have primary Sjogren's with auto-immune hepatitis and have gone into cirrhosis.....rarely drank, never smoked.....always went to the doctors but they were't paying attention.
I am on line now checking on everything and I ask questions. I am not shy about it, I have learned that you must be your own advocate because out of all the doctors I have had only one has been really good.
Sorry this is so long but my story is long and I don't want anyone to end where I am......one other thing this past winter I was sleeping about 20 hours a day and they just kept asking if I was depressed. I had encephalopathy, My liver was not processing the toxins and my ammonia levels was affecting my brain.......and no one put it together till June.
Educate yourself, don't be afraid to learn, ask and demand. Be your own advocate.
One other thing. Sjogrens destroys moisture so it effects your lungs first then it can go onto other organs. If you keep typing in different things, you will get different web sites....you will know which ones are legitimate or not....keep typing sjogrens and another word....lungs....
breathing.....etc....you will continue to get information....just be careful its not from an invalid website.....
Gcb in Pgh
Last edited by gcbpgh; 08-06-2008 at 01:51 PM.
Gcb in Pgh, I am soo sorry for what you have been through. I am consistently saddened by how familiar your story is sounding as I learn more about autoimmune diseases. I was frustrated because it took over 2 years to get a diagnosis and yet now I am learning that 2 years is NOTHING. I do appreciate your suggestions and input (and your openness to sharing your story).
What are you taking now for the Sjogrens? And has any of this helped to explain the issues with your heart or do you believe that to be completely separate? I know you mentioned arrhythmias. Is your blood pressure abnormal as well (high side or low side)?
This thread is a wealth of knowledge for me. I have an undiagnosed auto immune disease and I've always suspected it was Sjogrens. I have cotton mouth all the time, my eyes have become to dry to wear my contacts full time like I used to (even to sleep), my lungs have been feeling sore for several years and I even had a breathing test and but it came back fine. I get sores on the corners of my mouth occasionally and eczema in my ears. I am so frustrated at the lack of good Rhuemies in my area. I have chest pains ocassionally and have even had an angiogram which came back fine. I found an internist that will see me next week and that is huge to get in so quick. My regular Dr. won't even sign my Family medical leave slip because he doesn't know what I have and says he can't until he knows! I think it's because he doesn't believe how tired I am. Maybe he thinks I'm lying because my lung and heart test have come back okay. I have never lied to him. You guys are so helpful and from reading your threads I have learned to be more assertive when I go to this new Dr. I have always been somewhat timid in the Dr.s office, but not anymore. I will keep in touch and I hope everyone feels better! Peace
Because they found the cirrhosis I cannot take predisone which is usually prescribed.....(also over the years I have taken it for my lungs often) right now I am on plaquenil twice a day and it will take 3 months minimum to see any difference. I am assuming they will know by my blood work.
Also, when I was first diagnosed my immunologist said I had to see an opthamologist. He also confirmed Sjogrens. I am on Restasis twice a day and other moisturizing drops. It is important for you to see the eye doctor. I had no idea but my left eye has some blocked tear ducts. I was surprised because like you I didn't feel I had dry eyes. Just occasional allergy issues.
But Sjogrens left untreated can damage your eye so see the doctor.
They also don't know what causes Sjogrens. It could be environmental, genetic or a virus.....I often wonder about the infection I got from the hospital when I had my back surgery but I really don't know. That infection caused me to have a heart attack....I never had heart problems before.....and the only thing since is for some reason my heart rate will just race without this medication. I can't go off of it. I wish that was my only problem...The back surgery I had was from a car accident so it is unrelated to any disease.....
Since spring I have had many ct scans, endoscopy and another lung scan(the nodules have not grown) but I could not get the cough to stop. My immunologist told me to try taking a prilosec in the morning and evening.
Even though the endoscope showed no stomach issues, some issues with my esophagus which I cannot remember what they were called but it has to do with veins and its from my liver but the prilosec has helped me with the cough and a little with my breathing. I was surprised but would do anything.
This past winter when I was coughing, I would also vomit half the time so it was not like anything I had before even when I passed out from coughing.
You might try that to see if it helps. I do also have an enlarge lymph node under my left arm which is like a ball of fatty tissue but another scan and they said no lymphoma.......
Blood pressure is fine....heart is fine except the heart rate.....fatigue is awful.....skin is a problem with recurrent rash that no one will claim.....it could be from either .....I envy healthy people
I don't know if I am missing anything, don't be surprised if you can't remember things its part of Sjogren's just get a good doctor...look him up in your state to verify his license and any disciplinary actions.......also make sure he has a fellowship, that is something I did learn from the boards here when I had my back surgery, my first one was a disaster, the second a success but I read and listened to others on the back pain posts, I thank them to this day.
Usually whatever hospital he or she it at there will be a website under their name or practice.......stay in touch.....and take care
Gcb in Pgh
Last edited by gcbpgh; 08-06-2008 at 08:57 PM.
Puppybreath............the opposite of acid is alkaline and I do not drink coffee only tea, especially white tea.......also lots of water......with wheat grass in it to help with the acid......any brand........I had to go on a low protein diet which include dairy products that can aggravate allergies so if you do have allergies you might just try giving dairy up for a week to see if it helps.....if you notice a difference in your breathing you have some decisions to make.......also my internist is the one who did the Sjogrens blood test the first time but it was because I sat there crying that he had to help me so do what you must to get them to do what they must ......let us know and good luck........
Gcb in Pgh
Yes, I have seen an eye doctor, an excellent neuro ophthalmologist actually. I have extreme double vision which leads to balance problems and depth perception issues (I always feel like I have just gotten off a boat). Additionally, I experience numbness around my left eye and around the left side of my mouth (issues with the sensory nerves I believe). On rare occasions it has even affected my right eye but only temporarily. I have read in all the books that these types of peripheral nervous system disorders can happen with Sjogrens but this is yet another area of documentation that is void of treatment options. Truly. If all the books talk about these issues happening, why don't they offer some solutions?
And yes, I have had my eyes checked for dryness and yes, the ophthalmologist confirmed for me that my eyes are dry. He said they were making tears but not quality tears (i.e. not oily enough). He suggested adding Omega-3s (NOT Omega-6) to my diet and I believe it is indeed helping.
I, too, am addressing the PH balance in my system as it seems to be off right now (as documented by the leaching of minerals in my bones causing my osteoporosis). I am focused on water that is an alkalizer along with eating alkalizing foods and taking drops of a natural remedy I picked up from the health food store. I know this all sounds like a lot, but truth be told I am going at it fairly timidly.
I also have a wonderfully knowledgeable rheumatologist. She actually wrote the book 'A Body Out of Balance' which I have found very helpful as well. The problem is that the rheumatologists still farm you out to specialists for the bulk of the extraglandular issues and THEY tend not to be so knowledgeable (and don't get me started on how quickly they want to dismiss you and/or your medical issues when they come up against something they are not familiar with).
I am currently on Prednisone but am tapering down while beginning Plaquenil. There has also been talk of CellCept but we want to see how I do with the Plaquenil first. I do take a probiotic to combat the digestive issues along with Motilium (and the Omega 3s seem to be helping here as well). I have also noticed some improvement with Evening Primrose Oil. I also have very very low blood pressure and I faint easily so keeping my overall volume up is imperative. Consequently, I take Florinef and salt tablets, along with estrogen for that.
For the most part, I am doing better than I have in the past two years, but the thing that still scares me is when my lungs flare up. If I could control that, I think I would probably stop complaining and truly accept that I simply cannot do as much as when I was healthy. Once you can't breath (or by the twentieth time that you cannot breath) you wonder in those moments, if that breath will be your last. It would be nice to be able to avoid those moments. Okay, and I am a bit Type-A for the memory loss and concentration issues that come up at times.
By the way, I think this all came on for me because of mold poisoning. Just an FYI that you don't want to live around the stuff for any time at all. I did learn through trying to detox that bouncing actually causes your lymph glands to slush around and flush toxins. I initially used running as my 'bouncing' (hanging onto a treadmill of course due to my lack of vision and balance) but now I use one of those mini trampolines and my lymph glands (especially under my left arm as well) have improved quite a bit. Of course, remaining physically active has many other benefits as well (I believe it to be the number one reason why I have not experienced severe depression through all of this).
So there it is. My story. I am still hoping for a cure, or at the very least looking for further treatment options to make life easier... especially with my lungs. Please, keep the suggestions coming!!
Wow....did the eye doctor ever say you had sjogrens? Mine did on my first visit. I am a realtor so I am in and out of homes old and new and mold may be present. I haven't worked much in the last year. Regarding the ear problems, I was diagnosed with Ménière's disease a few years ago. Its a balance, noise, nausea thing from the ear. They have no idea what causes it. They offer valium for the nausea.....
I did forget one medication I am taking, it is Topamax, I have taken it since my last back surgery. It helps with nerve pain in the back but it also helped with my ear problems. they use it for headaches today too......
...another thing about my visit with the eye doctor, he also said I had lupus that sjogrens is rarely alone. I told my immunologist and he was very angry. But I wonder when the day will come when they say, "oh you have Lupus", nothing else can be done so its not an issue.
One other thing we have in common are hormones. You said you are taking them....I had my total hysterectomy in my early 40's so I went on estrogen only. That's how I ended up with the endocrinologist.....she put me on estratest for about 10 years.....about 2 years ago I no longer wanted the hormones with the horse urine and I did have the heart attack so I found a doctor who got me the bioidenticals (not an easy task) since I have the cirrhosis though I went off all hormones........my liver seems to not want to process anything and I am pampering it......
Regarding doctors and their competancy, I am at a loss. Maybe they just don't know. My problem is they look at me and say you look fine....how is that a diagnosis......I can't tell you how many times I have heard that. Recently my husband has gone with me and when both the immunologist and the liver doctor stated that to me even with the blood work in front of them I felt vindicated.......they would never say that to a man.....he finally agreed. I really think the whole medical system needs a make over.....
Like you, winter scares me, I am so afraid of not being well and my immune system just failing and my lungs choking me to death.....I started on a vitamin called immune factor, it has japanese herbs and other things on it.
All powdered so not to upset my stomach. I do take a lot of vitamins but only from one company I trust and we aren't' allowed to promote brands.
I can tell you I watch a lot of tv and shopping networks but that would be it.
Omega 3 I just ordered they have added mint to theirs so that is great sometimes it can be so fishy tasting....I just want to build up the best I can
Also, I just found out that the moisture glands that have been destroyed cannot be revitalized.....I have to ask about that one because I thought they could but as you are I am still learning.......stay well and keep in touch.
GCB in Pgh
Last edited by gcbpgh; 08-07-2008 at 09:05 AM.