sero negative, now a negative lip biopsy

[sunflower]

Hello all,

I have results to my biopsy - no Sjogren's!  The rheumatologist says it was a good sample - and negative.  I said, "I'm relieved.  And I'm not."  He said they hear that all the time.  So then, what is this?  Are doctors not interested in what it is since "it happens all the time?"

I told the surgeon (who was Stanford trained and excellent) that I would be surprised if the biopsy was positive because my mouth has recovered to a large extent.  I don't know if there's any truth to that, but he said if I had another flare I could come back for another biopsy.  The rheumatologist said he had no problem with that.  I understand from this forum results can go from - to +.

My neuropathy is slowly progressing in my toes and I have another EMG coming up, this time at UBC.  From my GP's responses, I feel psychosomatic about all of this.  I am determined to see him as little as possible.  My shortness of breath has mostly subsided (one deep breath relieves it), I'm not quite as dry generally, the vertigo lingers.  I guess I just wait and see if symptoms progress.  Maybe last year was just a figment of my imagination after all. 

Sunflower

[CMNK12]

Hi sunflower
Just reading your post and had a couple of thoughts. I saw in your bio line that you have had 2 types of cancer. I was curious if maybe you have some neuropathy as a result of the chemo? Also radiation to the breast can cause some scarring to the lung tissue itself...maybe a pulmonologist could shed some light on this. Chemo and radiation can do some strange things to the body including dry mouth.


I don't think that you have imagined your symptoms and you have been through quite a lot. If someone makes you feel this way...fire them and find a new doc.
Take care. CK

[sunflower]

I appreciate those thoughts.  Chemo can definitely cause neuropathy, but I was fortunate with my breast cancer and only had radiation - no chemo.  Interesting about scarring to the lung tissue.  After two years, I will have tenderness on that side to the point of dreading mammograms.  (Don't we anyway?!)  They are excruciating.  I have had a spirometry and it's normal.  If it gets worse again a pulmonologist is a thought.

Firing a doctor here in B.C. - if only!  It could well mean I join the ranks of the un-doctored because of the shortage.

Thanks very much, CK, for your suggestions and your supportive words.

[Sharon]

Hi Sunflower, I agree with CK: Fire any doc that makes you doubt yourself.
So much is still unknown in the field of medication and so much of it is baffling...
Personally, I'd be thrilled to hear I didn't have SJS as AI illnesses are bummers.
Did you ever have a positive ANA or any significant blood markers indicating inflammation such as CRP or ESR?

[sunflower]

No, Sharon, I haven't had any blood markers indicating inflammation.  I know the ANA and ESR were negative but I can't say for sure about CRP. 

When I see what you all go through I AM thrilled not to have SjS.  I had what looked like systemic symptoms and it was pretty frightening.  I am so blessed that most things have settled (compared with what they were from January last year to February/16). 

Thank you for all the support you have been to me.  You people are amazing.  Anybody want a Sjogren's book??

Sunflower

[irish]

I am wondering if you have ever done searches about neuropathy associated with dryness and other symptoms that aren't sjogrens?? There are some rare neuropathies out there that don't show up a whole lot but occasionally are diagnosed.

You might want to search the rare diseases web site and also check out genetic conditions with similar symptoms. Have you seen immunologist ever?? They tend to search out the genetic and other very weird diseases. Hope you can find the answer. The dryness is just a hint of something I am guessing. The neuropathy may be the key. Also, some people have neuro symptoms as their first symptoms so that could mean that you are a sero negative autoimmune disease of some type. Good luck. irish

[sunflower]

Thank you, Irish.  No, I haven't done any of that nor have I seen an immunologist.  This gives me some leads.  Thank you! 

I still can't get the ophthalmologist's diagnosis out of my mind (Sjogren's of the eyes dx 10 years ago).  That's why I've zeroed in on SjS. 

Thanks for opening up some new ideas, Irish.  Thank you all and best wishes everyone!  You are in an intense, lonely struggle and I will never forget you.  You've been there for me during a very perplexing time.  If I find out anything of interest, I will let you know.

Sunflower

[katie1111]

I am both sero and biopsy negative but have tested positive for dry mouth and dry eyes.  I have many of the other Sjogren's symptoms.  My hepatologist (I have PBC which often shows up with Sjogren's) calls it "symptoms suggestive of Sjogren's and my primary says he doesn't know exactly what's going on, but it is autoimmune.  The important thing is that my primary prescribed Plaquenil and my symptoms decreased.  I am sorry you can't change doctors.  Can you get a different specialist to treat one or more of your symptoms.  Perhaps that specialist will be willing to prescribed Plaquenil.

Katie1111

[ccaplin]

Hi sunflower! All your medications can cause dry mouth, and clonidine can also cause dry eyes. Coversyl plus also suggests you contact your doctor if you experience "signs of too much or too little potassium in the body (e.g., dry mouth; increased thirst; irregular heartbeat; mood or mental changes; muscle cramps or pain; numbness or tingling in hands, feet, or lips; weak pulse; weakness or heaviness of legs)", so I'm wondering if they've checked your serum potassium?

[Deb 27]

 Sunflower, I guess you can be glad then. Congratulations. I hope things just keep getting better for you.

[sunflower]

Thank you!  All of this gives me more to go on.  I'm glad to put this era behind me, but if it comes back in front, you have given me some options. 

I got another call yesterday, this time from the surgeon who did my biopsy, who kindly called to say it was negative.  He said if I have parotid swelling to come back to him.  Together with the EMG coming up, and continuing with my neurologist, I don't feel as shut out from the specialists as I feared.  Some doors remain open if I need them.  And as many of you have been saying all along, if the symptoms require treatment, get it and don't worry about a diagnosis.

Thanks again.  My sincere best wishes to all of you.