dx for sjogrens?

[acer 455]

   I dont understand? If you are showing the symptoms of sjogrens why dont the doctors just diagnose you? I have dry eyes, skin, nose, mouth, joint pain, no feeling urinating,and ed problems.and no smell or taste! My blood is neg for sjogrens but I have other markers like very low vit D and low test. Just want to find a doc who doesnt need the lip bio to Dx cause of the problems of that test. I live in Long Island NewYork is there any docs that will Dx without biopsy?  Also what is the details of this new test that I keep hearing about? I would appricate any advice?

[Joe S.]

I got my DX by asking my doctors "Dry Eyes, Nose, Mouth, Skin, and A$$, what do you think it is?" My one visit Rheumy said "Sjogren's - SICCA"

[Joy]

Hi acer 455

My Rheumy on my first visit dx Primary Sjogrens, then began to have doubts and sent me for more tests including a lip biopsy. My bloods had shown positive for SJ as did my symptoms, but for some reason she had became hesitant, but now says I have 'mild Sjogrens'. I have read on this forum that there are some that get the dx of Sjogrens without testing positive in their bloods or having the lip biopsy, I guess it's just different Rheumy's. I too have lost my sense of taste and smell, I have had an MRI to see if there are any obvious problems why and get the results this coming week. Just a question, although you cannot smell or taste your food, do you find that you either eat as before or over eat?

I am sure that there is someone on this forum who will be able to advise you regarding your other questions.

[stillinshockwithsjogrens]

My first big flare happened 13 years ago.  My bloodwork showed nothing irregular yet I knew something was wrong.  My friends, family, doctors all thought it was "in my head" so I never said too much about my symptoms afterwards and they subsided after a year and a half.  I was dry, lost my sense of taste/smell (brain MRI was normal) and just didn't feel right. 

That was my first big sign of Sjogrens, yet was not dx'd.  Until last year, when another flare happened and my bloodwork tested positive ANA and SSA; then I got a diagnosis.  It was, in a way, a relief to get one.  So yes, unfortunately, we can test negative for years with this disease.  The one specialist I did not see 13 years ago was a Rheumatologist; I believe if I had seen the one I am seeing now, he would have treated me regardless of bloodwork.  It is beyond me why a doctor won't treat the symptoms, even if the bloodwork doesn't confirm the disease.  There are so few treatments, and most of them don't carry much risk!

BTW I was eating all the time to try and find anything I could taste.  Doritos, Sour Cream and Onion Potato Chips, deep fried foods...it was a bit of an obsession to find things I could taste, I was missing it so much.

Perhaps there's another member here who is in NY who would refer their rheumy to you. 

[Joy]

giftedpooch: I am so thankful that someone else does the same as me... I thought that when I couldn't taste or smell I would not want to eat and hopefully lose some of my unwanted weight, but no, I eat and because I cannot taste or smell I keep going just in the hope that I will eventually taste and enjoy something. Alas, no luck. I am now going to start my diet on Monday after probably cleaning out the cupboards!!! Urgh!

If you find a way to stop munching then do let me know. Lol

[acer 455]

  Hi Joy  thanks for the reply. To answer your question I actually eat a lot less because of no taste.  Im actually depressed about it because I enjoy the taste of food. I want my dx because I havent been able to get back to work with this sjohrens so I want to go on disabity !  My doc seems like hes hesitating on a dx and im afraid of the biopsy because of possible nerve damage in my mouth.  also let me know if anyone could help us with our smell or taste?

[MaryBee7]

Joe, dry A$$       but I'm afraid to ask because think I'm going through the same.   I swear, people, what else is out there that we could possibly get that is so elusive ....  is there anything!?  Grrrr and Boo Hiss on Sjogren's!   

Acer, I'm with you on the eating thing.  My taste buds died suddenly (no joke) it seems just...stopped tasting.  Can still smell better than can taste.  I eat much less but currently am a bloated/swollen mess and getting ready for a GI work up next week.  I have no appetite!  Anyone else?  Food just doesn't appeal to me...still like my 3 a.m. coffee...and can work my way through a Hershey bar        yeah, yeah...I know...  but am so depressed right now with nothing moving in my gut .... hip pain...Fog City in the brain ... and (what else!?)  that I'm not giving up my Hershey's until they tell me it's either chocolate or a new intestinal tract.   

[Joy]

Hi acer 455

I do love my food, but will just have to tell myself that as I can't enjoy it, why eat so much. The extra weight is not good for me, so Monday diet here i come.

I had a lip biopsy done, I am based in the UK, and I can honestly say that I felt nothing during the procedure but the pain of having the injection to numb the area beforehand, that did hurt. The healing was quick and I did not suffer with any nerve damage at all. If you get an experienced Doctor then you should be fine. I do however appreciate that everyone is different and we all have our own pain levels.

[mindytyson3]

Hi acer 455

My Rheumy on my first visit dx Primary Sjogrens, then began to have doubts and sent me for more tests including a lip biopsy. My bloods had shown positive for SJ as did my symptoms, but for some reason she had became hesitant, but now says I have 'mild Sjogrens'. I have read on this forum that there are some that get the dx of Sjogrens without testing positive in their bloods or having the lip biopsy, I guess it's just different Rheumy's. I too have lost my sense of taste and smell, I have had an MRI to see if there are any obvious problems why and get the results this coming week. Just a question, although you cannot smell or taste your food, do you find that you either eat as before or over eat?

I am sure that there is someone on this forum who will be able to advise you regarding your other questions.

Hello so you had a lip biopsy done? How exactly do they do this? Does it hurt? Thanks.

[Joy]

Mindytyson3

Hi, I went to my local hospital, sat in a dentist's chair, they gave me an injection into my lip, which, yes, I have to say, that did hurt. After this had taken effect, I felt absolutely nothing, no pain at all. The Dr took out five or six small salivary glands to examine. They put some dissolvable stitches in, which again, I didn't feel a thing. After a few days the stitches started to come out. I had minimal swelling and the healing process was very quick. I was back to work in a few days. I think I waited two weeks for the results to come back. I had no loss of feeling after everything had healed, all went back to normal, you wouldn't really see the scar, only I know that it's there!

I must say, I was very blessed in that all went well, however, you will find others on this forum who have not had a pleasant experience and suffered either pain or swelling, so we all vary, but the person who performed this procedure on me did a good job.

Do you have a lip biopsy booked or are you just considering having it done?

[Dolly Dimples]

  It's been said many times on here, Get the symptoms treated whatever is the cause,  that is priority!
    Lots of Doctors just dont get it with SS,  we have to educate them!
     Dont just wait , firstly tell them you need something for the problems.
          There are many here that have never had lip biopsy, many who would never! (including myself.)
                        Dolly
               
   

[mindytyson3]

Mindytyson3

Hi, I went to my local hospital, sat in a dentist's chair, they gave me an injection into my lip, which, yes, I have to say, that did hurt. After this had taken effect, I felt absolutely nothing, no pain at all. The Dr took out five or six small salivary glands to examine. They put some dissolvable stitches in, which again, I didn't feel a thing. After a few days the stitches started to come out. I had minimal swelling and the healing process was very quick. I was back to work in a few days. I think I waited two weeks for the results to come back. I had no loss of feeling after everything had healed, all went back to normal, you wouldn't really see the scar, only I know that it's there!

I must say, I was very blessed in that all went well, however, you will find others on this forum who have not had a pleasant experience and suffered either pain or swelling, so we all vary, but the person who performed this procedure on me did a good job.

Do you have a lip biopsy booked or are you just considering having it done?

Oh gosh I don't want it to hurt! ha. Oh well things we have to do I guess..ha.  Thanks for telling me your story. No I don't have one booked just read that a Rheumatologist could suggest having one done and just wanted to know about it.

[Violet4]

After a year of this crap, I am about ready to just give up on traditional medicine anyway.  I know others have been going through this much longer.  To me, I don't even know if an official diagnosis is that important.  It's not going to change anything for me.  I refuse to get a lip biopsy.  If I'm already having issues with saliva, why would I risk potential permanent damage?  And the way things are going for me, that test would also be negative!  I had the remains of a bad tooth taken out and it took me 4.5 months to recover from that so I am avoiding invasive procedures.  So far, my blood work looks great, just a few wonky things.  I have seen my primary, GI, and a couple Rheum drs and various other specialists.  Apparently none of them have anything for me that is actually going to work or help.  I don't have more time, money and energy to waste.  It's just not worth the continual frustration.  From my perspective, this is not the worst thing that has ever happened to me.  I have been through some traumatic situations and I'll persevere through all of this too.  We're all different anyway so it's hard to say what will work and what won't.  I'm going with a gluten free diet and that has helped significantly.  I'm taking supplements and I'm sure I'll come across more helpful things as I go along. 

[mindytyson3]

After a year of this crap, I am about ready to just give up on traditional medicine anyway.  I know others have been going through this much longer.  To me, I don't even know if an official diagnosis is that important.  It's not going to change anything for me.  I refuse to get a lip biopsy.  If I'm already having issues with saliva, why would I risk potential permanent damage?  And the way things are going for me, that test would also be negative!  I had the remains of a bad tooth taken out and it took me 4.5 months to recover from that so I am avoiding invasive procedures.  So far, my blood work looks great, just a few wonky things.  I have seen my primary, GI, and a couple Rheum drs and various other specialists.  Apparently none of them have anything for me that is actually going to work or help.  I don't have more time, money and energy to waste.  It's just not worth the continual frustration.  From my perspective, this is not the worst thing that has ever happened to me.  I have been through some traumatic situations and I'll persevere through all of this too.  We're all different anyway so it's hard to say what will work and what won't.  I'm going with a gluten free diet and that has helped significantly.  I'm taking supplements and I'm sure I'll come across more helpful things as I go along.

See I don't see why I would have to do a lip biopsy. My mouth isn't the part thats dry its my eyes. My mouth has never been dry. Thank you for sharing this with me!