How can everything be wrong?

[Nancy60]

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

[irish]

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

[Tuurre]

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

[Tuurre]

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

[wendyoh]

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.

[Tuurre]

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

[Tuurre]

Not grandmother! Grandfathers sister is the other one with RA.

Right shall be right.

[slccom]

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

[Tuurre]

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

[slccom]

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

[Crymeariver]

Interesting that you mention you had ebv.  I'm interested to hear what the rheumy has to say Monday,

[Tuurre]

I'm so affraid she will reject me when i had no antibodies and a negative lip biopsi!?

But we will see on monday.

[quietdynamics]

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

[Gayle]

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

[irish]

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