Hi
I have a severe case of Primary Sjogrens syndrome and i know that! but why am i ( my body) so special, everything is wrong according to how it usually manifests.
26 year old when i got ill
Male
No antibodies
No dry mouth
No joint pain
and now negative on the lip biopsi!
Schirmers test is the only test that's positive 0,9 and 0,1
How can this be? What is wrong with my body? How can the lip biopsi show negative with a suvere sjogrens and propably lymphoma?
I got almost everything else i believe and from day one.....
Polyneuropathy 24/7 all over
Suvere visionproblems
Brain damage
Dry everywhere except the mouth
Bowel and bladder problems
Etc etc
And last year
Purpura
Propably lymphoma, swollen nodes everywhere
Vasculitis?
Best regards / Tony
I don't know Tony and only a team of good doctors can answer your questions. I sure hope you have access to at least one good doctor.
I have been thinking about you and will keep you in my prayers. I am so sorry you are going through all of this. After reading your story I have no right to complain. Take it easy and try to get rest. When do you see the doctor again??
I am curious how much of your health issues the doctor has diagnosed. Do not take this as a bad question. The reason I asked is that when people have very little positive tests the doctors are so slow to diagnose. Sooo, I am wondering if the doctor has said that you have primary sjogrens?
I assume that he has. So often the doctors don't like to put a name on a disease unless there is positive blood work. One can have all kinds of symptoms without having positive blood work or a positive lip biopsy. In fact there is a very high percentage of patients who present with all the symptoms without any positive tests whatsoever.
I guess I would not draw the conclusion that you have lymphoma until you have seen the doctor and had the appropriate testing done. Lymph nodes are really weird tissue and they can get so swollen and sore and not be lymphoma. We have lymph nodes in many places so if the body is out trying to kill us off and sending out all these antibodies our lymph nodes are tyring to strain the darn cells out to protect us resulting in the swelling of the lymph nodes.
I am curious if anyone has put you on plaquenil earlier in your illness. This does have the strong anti-inflammatory effect that can help more than one realizes. Also, it is true that some people find that they get little benefit.
Please know that illness can happen to anyone. It just happens. It is how we deal with the illness and huge changes in our life that is so important. It isi mportant to keep up and doing as much as a person can in order to keep our body and brain busy.
Our lives are definitely changed forever, but I am of the opinion that we need to hold our head high, do what we can and learn what we need to leave undone or put off until later. We have only one life on this earth and we can choose how we spend it. Having a diagnosis is nice ( I didn't have one for about 40 years, I just didn't feel good and had a lot of down days, missed months of work, etc and some days didn't think I would make it through til the next morning) but somehow just putting one foot down at a time and plugging along I made it to age 69.
I look in the mirror and don't know how I got to this point, but here I am, not worth a lick, but do what I can-when I can. So hang in there and think as positive as you can as it does make a difference in how your illness progresses. Good luck. Irish
thank you Irish.....I don't have the experience to be comforting anyone here. I can only put them in my prayers. You gave our new guest a lot of good things to ponder.
Thank's so much for your replies.
I'm out so late and have'nt got a rheumadoc. yet! Seeing her the 4:th of june!
Believe i'll get the lymphoma diagnose prior the sjogrens diagnose, just returned from the ct scan and the thing that bothers me is that they were letting me go and suddenly they wanted more pics, so it does'nt look good.
Regards Tony
Tony....please calm down.
I am on my lap top thousands of miles away and I can feel your panic through cyber space.
Listen to Irish.
I find that the thing you worry about most...seems to not happen.
Worry and concern make us take action...like schedule a dr. appt but way too much worry makes us anxious and panic and throws gas on the flames.
I myself have to remind myself of what I just typed above.
Listen to what Joe S. says as well
take care....and we care.
eye2dry
Tony I can only echo what irish says.
You seem so keen to get these diagnoses. If you haven't been diagnosed yet with Primary Sjogrens or Lymphoma, then I cannot understand why you would want these so urgent. I can understand that you are fed up, it's been a long time waiting, but you shouldn't hope for a nasty disease.
Sit back, let the docs do the tests, they might find something else far better thats causing these problems.
Thanks guys for your replies, letting me see my behaviour. It's true feel like a little kid blowing in the wind!
Started laughing reading Eye2Dry's comment. LOL......
You're right i would'nt want the sjogrens diagnose but i'm a 100% sure of that going thru my last fourteen years which has been a living heck! So just give it to me so i can have meds for it.
I'll try to be a bit calmer ;)
Got the ct test results, that was good was that the spleen, pancreas and kidneys looked fine and no swollen lymphnodes in the abdomen/cheast, i dont know how much they can see on a ct scan? the liver size was normal but they found small cysts in the liver and something wrong with a blodvessel!? So i'm going for a ultrasound next week. Can Sjogrens affect the liver?
I'm on no medication (eccept cipralex for three months) and i'm sober five years back!
Does this ct scan indicate/tell anything, good or bad?
Best regards Tony
Tony,
Lymphoma can only be diagnosed through a surgical biopsy. They would need to type or classify the lymphoma. Then they would do PET scan of the body which measures the metabolic activity in your body. Cancer is more metabolically active and shows up as hot spots. They can use the CT scan to measure node size and find one for removal.
Lymph nodes can swell because of infection or inflammation in the body. Your 'cytology' on the neck node indicated that it was not malignant (I'm guessing you meant surgery). I had an inflammatory process in my lacrimal gland and the node under my jaw/ear was as big as a golf ball (looked like a tennis ball to me on the CT). After surgery it went down to normal size. Perhaps the liver problem is causing something systemic?? You've had pretty good news so far so continue to hope for better. Hopefully the ultrasound will lead them in the right direction.
Please try to wait for the test results and doctor's diagnosis. Your case does seem complicated and there are over 80 autoimmune disease and other possibilities. I can hardly hazard a guess as to what might be going on. It rarely pays to self diagnosis. We all know how hard it can be to wait!
Good luck and let us know how the ultrasound turns out.
Sarah
Hi Tony
A rare disease that is uncommonly associated with Sjogren's syndrome is primary biliary cirrhosis, an immune disease of the liver that leads to scarring of the liver tissue. But you wrote that you have been sober for five years, does this mean that before this date you could have damaged your liver through alcohol.
The cysts you describe could be an effect of alcohol, as I said before wait for the correct tests to be performed, there are so many possibilties.
Hi guys
I dont believe me drinking before has anything to do with the liver issues, did'nt consume that much, quit cause i felt more and more allergic to alcohol, finally my body did'nt like even one beer!?
The liver issue is something with sjogrens, thats just a guess!? Hope not lymphoma!?
So the ct scan does'nt say much, is'nt it positive allthough that it did'nt show an enlarged spleen and big lymphnodes where they looked?
/Tony
I really think you should relax until the 4th. The lymph nodes are probably just inflammation or a mild infection. Your regular doctor should have done routine labs.
You need to know that sicca can be caused by neuropathy itself, so you may not have sjogren's, since everything (including lip biopsy) is negative and you don't have dry mouth.
Give the rheumy a chance to evaluate before you get too wound up over this. You'll need to be patient. You can make maters worse with all your anxiety.
seems that a negative CT scan is a very good thing!
I've also heard that diabetes can cause dry eyes, mouth, joint pains, etc so a lot of the same symptoms we see in SJS can really be caused by other disease. I've read that pre-diabetics can also experience peripheral neuropathy so it is important to let the drs run all the tests before we worry about our diagnosis. I'm at fault for worrying as my family has so many bad health issues and I've avoided them up to this point. At times I feel the wall is going to come crashing down at any minute!
Tony,
I just want to assure you that cysts on your liver don't necessarily mean there's something bad going on. I have some cysts on mine that were found 12 years ago, and they are still unchanged. Good luck with your results!
Cheryl
Tony,
I also had some liver cysts show up on an abdominal CT scan. I was told it is not uncommon and that they were benign, nothing to worry about especially since all my liver function blood tests were normal. Try not to worry and hope your appointment gets here soon. I know waiting is hard!
Nancy
Tony, I think the docs did a good job of explaining the cat scan to you. They didn't tell you that anything was wrongn. Said only that the liver had cysts and the funny blood vessel. I have had a liver cyst for about 20 years. It is not unusual to have them.
Yes, cat scans are good about showing up things that are wrong.They are very good about showing up enlarged lymph nodes. So far nothing sounds amiss. I am wondering why you think you have lymphoma.
I am a retired nurse and I will tell you that reading all this medical stuff on the internet is one sure way to drive yourself crazy in a hurry. The problem is that there are so many sites that have incorrect information. People with medical education can usually pick out the bad sites real quick. People without medical education can find themselves thinking that everything they read is the gospel truth.
Trying to self diagnose is one of the worse things you can do. The only way to find out is to go to the doctor and get some tests done. Remember that sjogrens is an autoimmune disease which causes a huge amount of inflammation in the body. Inflammation causes the lymph nodes to swell and often get very tender.
Also, sjogrens can make you feel like you are dying. You can feel so weak and ill--ache all over. Some people say they hurt so much that even their hair hurts. Yet, with all this discomfort there is often very little that the doctors can see by eye. They can do the blood work and cat scans and if nothing shows up on these testings then the best thing they can do for us is to treat the symptoms. It is nice if a doctor will consider the fact that it could possibly be autoimmune. This way they may be more apt to pick up the autoimmune stuff should it appear. Good luck. irish ;D
Hi
Iv'e done tons of bloodtests, the only thing that's constantly is mildly elevated esr.
No diabetes.
I'll hope the liver issue is benign, they saw small cysts but why they wanted to a ultrasound was cause they saw an inflammed bloodvessel!?
Thanks for your replies and i wish the best for all of you aswell.
/Tony
Irish
Why i believe it's lymphoma is that the nodes are swollen everywhere, had a friend who felt them the other day on my ribs, cheast, he was also questioning the docs cause he aswell thought it's obvious that they're swollen all over, he also compared with himself and he did'nt have any lumps not even one at the same areas. I also have blood/brown spots increasing, about 10 in the back of my knees for lika 6 months and know i got more of them in my groin about 10 there aswell, 5 coming last weeks!?
I have rashes on my feets and i'm extremely fatigued, like i said this is another level of fatigue, just lay in bed all day, to fatigued to be a part of life.
I have'nt read on internet first trying to find stuff, i have just been searching when a symptom occures not the other way around.
It's a great relief to take this with you guys, with your experience, thank's again.
One things that also is why i'm sure it's Sjogrens, it's the intimate thing, not funny to talk about, my penis is so dry that the skin brakes into ulcers so now i can't have intercourse cause it hurts to much, just new stuff all the time.
/Tony
were you in millitary ever tony? Just wondering if you ever were given stuff that could have triggered your issues or exposed to something. you sound chemically sensitive i.e. not tolerating alcohol, vasculitis can be triggered by certain meds/chemicals.
Nancy60 thanks for the reply about the liver issue, gives some relief.
No have'nt been in the army, but i believe i had the sensitivity all my life. Have some other autoimmune stuff, lingoa geographica!?, lichen planus, perthes disease, "allergy" against acid food.
Then i got ebv when i was 22.
My aunt and grandmother has severe RA, all together it's logical for me that's sjogrens it's the only explanation.
Thanks for writing
/Tony
Not grandmother! Grandfathers sister is the other one with RA.
Right shall be right.
Be sure the doc knows about the family history. My grandmother had severe RA, and I got her body's genes, mostly, and knew I would get arthritis sometime. It hit actually in my 20s, in my feet, but I didn't realize it until it got much worse in my 30s and I got on anti-inflammatory meds. I noticed that my feet didn't hurt any more, too. I was diagnosed a few years ago with primary Sjogren's, and am so grateful that I don't have RA.
I am really, really tired of being tired, though. I"m sorry you are suffering so much, and hope that you can find some relief soon.
Sharon
Hi Sharon, thanks!
Yep understand now that the genes could have been better, for all of us. 😉
I'm seeing the rheumadoc on monday and will like you said talk to her about the family's history.
My mother has been in denial of my illness, she's so affraid with this lymphoma thing but finally today when we talked she understood that it is Primary Sjogrens Syndrome that hit me 1998. She were there and saw when i crashed but the whole family belived the doc's at that time, talking about burnout etc etc.....
So it's nice to finally after 14 years get some support and understanding from someone in the family.
New stuff, starting to get joint pain now!? Fingers, toes, elbows, flare or late stage sjs?
Thanks for your concern and wish you the best with all your problems aswell
Take care/ Tony
For whatever reason, many mothers feel so guilty that they passed along genes that make you sick. I have no idea why, since they certainly didn't do ti deliberately to hurt us! Thanks, Tony, and keep us posted! Sharon
Interesting that you mention you had ebv. I'm interested to hear what the rheumy has to say Monday,
I'm so affraid she will reject me when i had no antibodies and a negative lip biopsi!?
But we will see on monday.
EBV: shows in my blood work. Dr. says common.
"Epstein-Barr virus (EBV), or human herpesvirus 4, is a gammaherpesvirus that infects more than 95% of the world's population. The most common manifestation of primary infection with this organism is acute infectious mononucleosis, a self-limited clinical syndrome that most frequently affects adolescents and young adults."
Pediatric Mononucleosis and Epstein-Barr Virus Infection
Author: Nicholas John Bennett, MB, BCh, PhD; Chief Editor: Russell W Steele, MD
Hi
I had/have EBV - my titers were crazy high. I have not been tested for a long time. They told me then to quit work... amazing what changes there are...
Gayle
tuurre, Have you been seen by a neurologist??? It sounds like you need to be assessed for the neuropathy as it could be from sjogrens and it could be from some other autoimmune issues. Just to let you know, most of the autoimmune diseases have a higher incidence of lymphoma as a consideration. My hubby has celiac sprue and microscopic colitis and has had them for almost 50 years. They keep a watch on him also.
Also, a dermatologist may have some input on your rash although rash can be present in most of the autoimmune diseases. I dealt with a rash that was really painful for about 10 years before diagnosis. It wasn't present all the time but would present on my upper arms and spread slowly and burn and itch like crazy. Finally saw a dermatolpathologist who did a biopsy and it was Bullous Pemphigoid. That was before I was diagnosed with the sjogrens, myasthenia gravis, Hashimotos and severely low t-cells related to autoimmune disease.
So often if we can get these other specialists involved we can get some validation about some of the symptoms that we have. I think that most of us have been through the "it is all in your head" route and docs have wanted us to see a psychiatrist. I was way ahead of them. I had suffered from depression for many years and already had a psychiatrist and was on medication. I would tell these doctors with the "all in your head" nonsense that "no thanks, I already have a psychiatrist and am doing well, thank you". However, these docs didn't believe it and would tend to pass me off as noncompliant.
It was my psychiatrist who told me that I needed to apply for disability due to my illness and that it was not a psychiatric illness but a physical illness. When I think back to all the doctoring I did and money spend on gas, food, etc., it makes me mad. It also makes me tired!!!!lol
Hang in there. It is always the darkest just before the dawn. Just keep pestering these docs til you get an answer. Sounds like you could use both plaquenil and something like cellecpt or imuran. Irish
Irish
Got to get the sjs diagnose before getting a neurologist.
Trust me i now about the lymphoma, i say that 99% that i'm there already :(
Thanks for the reply and thoughts about the meds needed.
/ Tony
Why do you need a sjogrens diagnosis before you see a neurologist. Sometimes the neurologist is the one who makes the first connection between the illness/symptoms and the disease.
Neurological symptoms are often some of the first symptoms that show up in autoimmune diseases. THere are many people here who have had the neuro issues first. The neuropathy, balance issues, etc are very common. I have suffered from a proprioceptive disorder at least15 years prior to getting diagnosed with sjogrens.
There are many neuro symptoms that can be had that often accompany Hashimotos diagnosis. Balance issues are noted with Hashimotos/thyroid issues. I questioned this with my doctors for years and they all just ignored me. Turned out I was right!!! IRish
You do NOT need to be diagnosed with SjS before seeing a neuro. i had neuro complications before bad Sjs symptoms. But either way, the neuro should be able to determine any neuro problems (regardless of what is causing it) and treat accordingly.
If you don't mind me asking; are you in the US?? If so, are you using an academic hospital?
I believe you said you were in Sweden?
Is there stringent restrictions in their healthcare system on getting help for goodness sake.
eye2dry
Yes i'm in sweden
Sorry you're right about the neurologist, i saw him in februari for the polyneuropathy 14 years too late , he just took a lot of bloodwork and then sent me to the rheuma doc. But he did'nt do any further tests!? So maybe they will send me back to him after getting the diagnose.
I did a pet scan of the brain and lumbal punction of the spinal tap 14 years ago at the ER when i got ill and they did'nt see anything so they let me go!?
I'm was so tired then and now so i think i did a misstake not proceeding then, getting a proper diagnose.
It's almost the same now, i dont know what to say to make them listen. Just hope i get the diagnose on monday.
Thanks again for all your support.
/Tony