I just got my results.
My SSA is -.2 (negative POINT 2).
My SSB is .3 (point 3)
The nurse on the phone said my liver, kidney, and thyroid tests were all "normal." So I guess the doc assumes I do not have Sjogren's even though I have just about every symptom and have for years. He tried to explain away my dry eyes by saying it was due to be taking Claritin. But I told him that I'd only been on Claritin for a couple of years and have had dry eyes for 16 years. Also I recently went for about 1 1/2 mos. without my Claritin and the dry eye symptoms did not change at all. I told the rheumy this, but he didn't seem to know what to say.
Where do I go from here?
Lip biopsy and find a new doctor.
Ditto!!!
My blood test were normal. My lip biopsy show Sjogrens. My ENT did a lip biopsy for me. Try and find another doctor. We have to shop for the right doctor now -- just like the right shoes. It is a shame but it is true. Good luck. Hugs!!!!
Yes, honey you have to keep at it till you find a doc that will help you.
Also start a symptom diary. Keep notes of dates, frequency, etc.
Don't give up. We know how frustrated and invalidated you feel!
Janna
Hi Angelmom,
I too would look for a second opinion, and maybe you'll be able to find a physician that will treat your symptoms without having to get a lip biopsy.
Hang in there and take care of yourself -
Patze
Angelmom,
What was your ANA?
Refer to my response to loobee's post.....antibody tests all negative...could my hashimotos be to blame not sjogrens ?
Hi I'm new here. My name is Thelma, 46 y.o. Have had dry eyes forever now they've dried up to a crisp. They are sooooo red and it's just so embarrassing.
I've been on restasis for about 3 years. This dryness just set in about 3 weeks ago. Nothing I do rehydrates my eyes. I use Systane, Genteal gel during the day. Genteal ointment before bed. Nothing is helping! What can I do?
I'm going for my lip biopsy on May 10. What should I expect? Will my lip hurt after the procedure?
Thelma
They did not check my ANA as far as I know.
Thelma,
I've not had the lip biopsy, but many others have. The after effects range from nearly painless and perfect recovery in a couple days to considerable discomfort leading to chronic numbness in that area.
The results range from; Positive, Negative, not enough cells to determine, borderline, etc.
Apparently, it depends on the skill of the professionals. From what I understand there are 3 important things that require experienced and qualified medical specialists; It is important the surgeon gets enough of the specific cells, and without damaging nerves. It is also very important that the lab be knowledgeable in reading the slides.
Standard advice from this site is; if you get a negative result but still feel pretty sure you have Sjs, you should get a second opinion. You can take the slides to another lab, or do the whole thing over again.
Hope this helps you!
Good luck!
Janna
Sometimes I thnk the only time I will show positive is at my autospy,,, as for Lip biopsy,, I had it,, only showed some fibrosis,, then when the neuro stuff started,, I had a punch biopsy,,, SFN,,, then they had me get a sural nerve biopsy,,, didnt show much,,, but having that done left the left side of my foot numb forever,,, how ever long ever is,,
Find another doctor,, one that will listen,, go online and do a search for Physicians in your area,, a lot of sites give you patient ratings of these doctors,, oh,, as for my lip biopsy,, I am still numb there
OMG navydad, I'm sorry you've had such horrible experiences! Is your entire lower lip numb?
Thanks for your reply too JannaLee! I'm scared now!
This is what the doctor who is doing my biopsy says his Special Interests are:
Chronic Cough; Esophageal Disorders; Hoarseness; Larynx Cancer; Larynx Lesions; Salivary Gland Tumors and Disorders; Throat Problems; Voice and Swallowing Problems; Zenker's Diverticulum
He really was awesome at diagnosing me with Laryngopharyngeal Reflux!
Sounds like you found teh right guy,,,, its really no big deal,, like I said,, it all depends who does it,, some use the right tools,, I think mine used a sharp roack from the parking lot
It's good to see that you at least still have sense of humor!
I really like this guy and I pray he does a good job on me.
Yours used a sharp rock Navydad? Wow, mine just ripped mine apart with his bare hands! ;) :D
Good luck Thelma, and don't forget to let us know how it went!
Patze
Thanks Patze!
I'll let you know how it goes! I'm a big chicken so I know I'll be freaking out on 5/10. OMG! Almost around the corner!
Thelma
If your doc likes all those diagnoses, Thelma....he must like sticking tubes down or into one's mouth. I suppose he has done a manometry?? If you have had that, the lip biopsy is a walk in the park....not even worth a second of worry.
I've never had a manometry Inga.
The only thing I've had done was for the doctor to stick this hose/scope up my hose and down to my throat. I was gagging!
I was not numbed or anything for that.
I've had a colonoscopy and I woke up in the middle of the procedure!
Thelma
Well, you probably wont need a manometry. After it is done, in order to go home, they make you swear never to discuss it with any one. JUST KIDDING, but that test, is evil. Nothing, and I mean nothing is as bad as that. No, they don't medicate you for it either. The tube goes thru your nose into your stomach and gets withdrawn over 20 minutes, while you gag the entire time and if you have issues, your esophagus spasms, since it doesn't like the tube in there. Honestly, it is miserable.
You will breeze thru the lip biopsy, but, then you need a rheum or neuro who puts stock in it.
You may have better luck with a European doc on that....that is how my diagnosis finally occurred...a European doc, (now here), said that I had SjS. Several American docs prior to that said the lip biopsy was meaningless. Shortly after I was 'diagnosed' with SjS, then I went seropositive for ANAs.
Now I am fighting to keep my treatment, because, the ICD codes for Sjogren's and Sicca are identical, even tho SjS can be a very serious, life threatening disease in some. My treatment is really for the neuropathy, but, for some reason, they don't associate neuropathy with SjS and coding comes up Sicca. This is a problem that could affect any one at some point, if you need substantial treatment.
Jesus Inga, I home I never need a manometry.
I hope the biopsy is easy. I had a horrible night last night. My rheumy is the one who suspects Sjogren's so I hope the procedure is done right.
He is testing me for 13 different things and ANA is one of them. I don't have results yet. This just happened on Monday.
I hope you are able to resolve your ICD issues Inca.
Sending you lots of prayers and healing energy,
Thelma
Lip biopsy was a MUST for me. Hardly ever have positive readings (but I do sometimes!). ANA's are positive sometimes. I really wonder why that is???? Diane
Thelma, I agree with most of what was said above. However, a good doctor is a necessity. But, having a good doctor cannot guanantee that you will have a painless biopsy or healing. No doctor can predict how the patient will heal. Hopefully, you'll be one who has good recovery. It's not an amputation! So we are talking about a numb lip. Nothing that will change your daily life. ;D ;D Lucy
:D Some of you are too funny!!
susanep :)
Are their other symptoms? Dry eyes can just be caused by so many things.
I don't mean to be negative, but I always get confused by so much mention of ANA tests.... I was told by Drs & the internet that positive ANAs are common even with people who don't have a known health issue. Originally I was sent to the rheumy & all I knew was that I had a positive ANA & my symptoms. That Dr even said I was probably in the wrong place. (I didn't realize that my low white blood count was meaningful to the first Dr b/c I had that as long as I could remember..) Anyway... unfortunately the rheumatologist was wrong:-( I would rather have something "fixable."
Eyeamdry, I hope my biopsy heals soon and that it's not painful!
Johnson, I do have other symptoms, achenes, stiffness, fatigue, a little bit of dry mouth. last week I fainted and this morning I almost did again but this time I made it to a chair! I was fine one day and then the week of 4/12/10 I started to feel all these symptoms all of a sudden.
I've had dry eyes for about 5-6 yrs
My lymphocytes are low and my monocytes are high.
Inga,
Thanks for filling me in. Now I know why no one told me about the manometry test...they had to swear never to discuss it in order to leave. I couple weeks ago I asked about this test and just figured that many hadn't had it done since I didn't hear any details. So I walked in blind an unaware of what to expect. HOLY MOLY!! I wasn't required to sign their confidentiality agreement, so I will make it my mission to warn others of the horrors of this test. I will say, if they didn't get what they needed from that test, they NEVER will, because I won't do it again...ever. The tech told me that a Marine informed her after completing the test that he thinks the US Gov't could use her to torture prisoners.
I should gets results this week.
Also, If you're fighting over the IVIG (I did for years), have the doc use the neuropathy code instead of sjs. I was getting it under an IgG subclass deficiency for a long time, but then had to get the neuro to code it under for the neuropathy in order to continue. Then I developed a severe reaction after 11 years of using it...meningitis (with white cells over 700), so never again. I actually helped some, so I was sad to have to let it go.
Thelma, the biopsy was not painful for me. Although I have a knot and small area of numbness, but it's really no big deal. The test was more than positive, so was helpful for my diagnosis.
Anita
Hi Anita, did the biopsy hurt while it was being done or did it hurt after the numbness wore off?
The Manometry test should be used to torture prisoners. OMG!!! This sounds like an awful procedure!
thelma