arghhh

[kvmx]

hello,

goodness I don't know where to start. I had developed Epstein Bar virus when I was 22, I maybe was sick like a month then it went away. I'm now 36 and out of no where I started having immune issues. First I developed Hashimoto's disease, they thought I had MG but since I was sero-negative they couldn't be 100 sure after taking mestinon I went into remission. a year ago I came down with MONO so weird since no one I knew had it, that lasted about 4 weeks. at the same time out of no where I developed severe dry eyes, I could no longer wear contacts. I went to the dr and did some eye tests and I have zero tears he believes I have Sjogren's Syndrome, but my antibody test came back negative. My salvary glands have been getting worse and worse in the course of 2 years. But no dr will biopsy because my test is negative. Recently in the past 6 weeks my lymph node under my left arm is enlarged. Now my family dr can't figure things out because she says with autoimmune diseases its tricky.

kim

[jonnell]

Wow it is so weird reading your post.  My little girl who is 4 has sjogrens syndrome.  When they did her blood work to test for it she came back positive for at one time having the epstein barr virus her body fought the virus but her Rhumy said it just kept fighting and turned on her body.  We didnt even know she had mono and what is a 3 year old doing with mono.  She also had MRSA 6 times from birth to 3.  She also has benign joint mobility syndrome.  She also has the butterfly rash of lupus but tested negative for that.  I really dont believe in these blood test because so many people have immune disorders and have different blood test results.  You need to find a doctor that will treat your symptoms and not just your test results.  You will find a lot of love and support here.  Good Luck                         Jonnell and Jenna

[Linda196]

Hello Kvmx, welcome to Sjogren's World.

Your GP is right about one thing for sure...autoimmune diseases are very tricky to diagnose. For people without serum antibodies, it's even trickier. I'm wondering about not doing a biopsy because of negative bloods...that's actually the appropriate time to do it, because with positive bloods, you don't need a biopsy for diagnosis!

You'll find as you get to know more of us here, that exposure to either Epstein-Barre, or an aggressive case of Mono are often triggers for autoimmune disease.

You may need to go on a bit of a doctor hunt, to find a rheumy who is prepared to treat you without a definite diagnosis, or go the extra mile and actually get you a diagnosis. Please keep us informed about your journey.

[irish]

Hi, Curious about your MG tests as I have Sjogrens, MG, Hashimotos, severely low t-cells, Bullous Pemphigoid and asthma. Did they check your anti-striated muscle antibodies or just the acetycholine? A fair amount of people have sero negative MG so make sure that you get this rechecked on occasion or watch for reoccurence. Sounds like your body is having a hard time making up its mind on which disease to give you.

You don't need to have any positive blood work to have autoimmune. A certain percentage of people never have positive blood work but the docs should be treating the symptoms plus should treat the autoimmune disease aggressively to halt the attack on the body. If you are having issues getting diagnosed it may be wise to get a second opinion. Is there a teaching hospital close by you.. Let us know how things come out. Irish

[lynnmarie219]

Hi Kim and welcome to Sjogrens World!

I agree that you need to find an open minded doctor who is willing to treat your symptoms even if your test results are not coming back positive. There are so many people here diagnosed with sjogrens whose labs are negative...but their doctors looked beyond that and treated their complaints and symptoms anyway.

Do you see a rheumy? If not, can you be referred to one? Irish has a good suggestion about going to a University Medical Center or teaching hospital. There are so many specialists and research going on there and they have seen a lot more than some of the smaller town doctors. Its definitely a good place to start looking!

Let us know how it goes for you....good luck in getting some answers!