Hey There,

Welcome to the group :)
There are some very kind and knowledgeable people here and I hope you find the support you need moving forward from the point you are at now.

It is no wonder you are feeling depressed..just had surgery and facing a possible Sjogren's diagnosis- that is a lot for any one to handle.

I do not know the type of GI issues you have or the surgery, so I cannot comment on that, but I can tell you that Sjogren's can be a very manageable illness.

It is very hard to diagnose- blood work alone is not always accurate, so you may want to seek out a good Rheumatologist, but should you get a solid Sjogren's DX, there are many OTC option and RX options to help with some of the symptoms, and many people right here on this board, work, have families, social lives etc...

I think it is excellent that you have a therapist because your life is in flux right now, and the support a therapist can give is invaluable.

As someone with Chronic Illness, I can identify with friends and family who ask, but don''t really want to know how you are feeling or the details of how your illness affects your day today life. This can be very hurtful. Our loved ones expect that a surgery or medication will "Cure" us, but with a Chronic Illness, these things do not cure, but they do help us lead the healthiest, most fulfilling life possible given our personal circumstances.

This for some reason is incredibly hard for those closest to us to understand...I'm not sure why. Perhaps you could bring hubby to the Dr with you regarding Sjogren's so he can hear how Sjogren's is treated, and while there is no cure, it is not a death sentence either.

I am glad you are here and posted, Please post anytime and feel free to jump in on any post. I hope you will follow up and let us know your test results for Sjogren's and how your husband handles things, and how therapy is helping you manage so many changes,

Best, LuLu

I will comment on a few of the mysteries in your reply. I had gallbladder surgery as a chance to alleviate nausea and vomiting and abdominal pain. Two things happened as a result. One) they found a lot of adhesions so it was a very good thing I had the surgery and two)it did not alleviate the symptoms, causing the GI doc to conclude, with other tests, that I actually have gastroparesis. I still have trouble keeping food down and have had to stick to soft stuff.

I have oral thrush a lot.

I have had what they thought was fibro..now they are not so sure.

my eyes, while do not burn most of the time, do get scratches in the cornea from time to time overnight. and I am very light sensitive.

I have dry skin.

I get tired easily.

These are the things that point the doctor towards thing DX. And what caused him to go down the blood test road with me.

Thanks for adding to your original post. I'm sorry to hear of your GI problems. GI issues are not easy.

It was wise of your Dr to run some labs, especially since you have oral thrush...
Sjogren's is incredibly hard to DX because its symptoms mimic that of so many other auto-immune diseases. Dry skin, fatigue, and dry eyes and thrush, while all can be found in Sjogren's can all be side effects of medications, and Dry eyes and fatigue, and oral thrush can be symptoms of Lupus as well as Primary Immune Disorders.

Oral Thrush can be a hormonal imbalance, and the long term use of anti-fungals can cause the dry skin and eyes you describe.

About 25% of the population get false positive tests for Sjogren's. So, you may want to ask your DR about a Schirmer's test and a Lip biopsy for added confirmation, and it helps to have a Dr who is flexible enough to know that as your symptoms change, your DX may change again b/c blood tests are not reliable.

You may also want to ask your MD what other tests were run- SED Rate, blood counts, antibodies...

Please understand, I am not in anyway minimizing the pain and stress you are going through right now- we have all been through the DX process and is not easy and it is incredibly stressful. I just want to tell you these things to stress the importance of having thorough bloodwork, a good Rheumatologist for a 2nd opinion if you are currently being Dx'd by a PCP, and possibly a work up by an Immunologist...

Best, LuLu

Hi. I don't feel that you are in any way minimizing my stress. Most of my contacts won't even talk to me about this. I think the ANA blood test that was performed on Friday was just the step off point he wanted to use. I do plan to contact a rheumatologist. I just don't know when would be appropriate. Because I have to tell you. I am SO tired. I didn't know, also, that there was such a thing as an immunologist.

ANA is the jumping off point, so that is a good start....I learned the hard way that there are Immunologists- after a year of being bed ridden with GI Infection.

I think, you might consider asking your Dr if s/he ran a cbc, SED Rate and checked your IgG levels as well...

If anyone else on the board knows of any other pertinent blood work that should be done before making a Sjogren's DX, I'm sure they will jump in

I get how exhausting this whole process is...being sick, and mucking about the medical system with little or no support.

Post here as much as you like...this board is not always that active, but the folks here are very experienced and knowledgeable and always willing to help.

Rest well,
LuLu

I'm having trouble sleeping. actually for a while. I feel like whenever I stop moving my tongue, I start to choke like I'm gonna gag or puke because things get stuck. I don't know what to do. It's late. I can't go get anything. I don't drive.

But...I HAVE made a decision...if things happen that make the docs want to do a lip biopsy.... I'm going to refuse it. They don't need it. I don't need it. And it's painful. It's just the way I feel. I have that right.

So I'm up. Because I keep choking on thick saliva. And this sucks.

beggs

Hello and welcome to the group -you will find members to be supportive and knowledgeable.

Look up butyoudontlooksick on the internet - great article to share with friends and family who do not understand and also the spoon theory which can help you to explain to folks how you feel.

I am sorry to hear that you have had such issues and gone through a surgery that may not evn help you.

LuLu is correct - bloodwork is not always accuate but if you are lucky you can find a good rheumy who can help you with your diagnosis and treatment.

Also LuLu is so right that it is great that you have a therapist - autoimmune is such difficult thing to deal with, so much uncertainty and so many changes and at this point not even knowing is wrong with you can be so very stressful.

I will pray that you get an answer soon and can begin treatment. Sending positive thoughts and prayers your way.