Lip Biopsy

[Wynter]

Hello All,

I finally broke down and had the lip biopsy done yesterday, especially since my bloodwork was normal. It wasn't as bad as I thought and so far only minor soarness. The ENT said it would take about a week to heal. I should have results next week.

The good news for me is that my breast MRI came back normal. They thought I had a recurrent phyllodes tumor, which was removed last summer. It's weird, a couple of months after that surgery, is when I began getting slight symtoms of Sjogrens. I guess it doesn't matter what causes Sjogren's, the point is that I probably have it.

My question to the forum is what if the biopsy comes back negative? I have all the symptoms and my primary says he thinks I have it. What can I do to get someone to diagnose me on the clinical symptoms? I would like to try Plaqenial. My primary said he can prescribe it.

I also have other questions that are related to skin that I posted in that forum. If you are interested please read and give me your advice.

Thanks!

[irish]

Glad to hear that you are getting along well with your biopsy. You had a doc who knew how to do one. If it comes back negative you can ask your doc to start you on plaquenil it you think you need it. It just depends on how your doc feels. Many docs won't treat symptoms when bloodwork is negative so if you doc will do it that is great.

The idea is to start therapy as soon as possible to slow the progression. Good luck. Irish

[Scottietottie]

Hello Wynter 

I'm glad to hear your lip biopsy wasn't too bad and I'm also glad to hear that your MRI came back normal. That must have been a relief.

take care - Scottie 

[lynnmarie219]

Hi Wynter!

Well you have good news all around today! The lip biopsy went well......the MRI came back normal...and you have a doctor who is willing to treat your symptoms even if all the tests come back A-OK! All good news! 

Keep us posted!

[Patze]

Hi Wynter,

Let's see, negative blood work, possbile negative lip biopsy, hummm, sounds like me!   For give me as I'm in one of my moods (more dental work today); ugh.

I've always been sero negative and I don't think I'll ever go positive, and my lip biopsy was deemed negative (even though the report stated some infiltration) . 

Anyway, no matter how the biopsy turns out, have a long chat with your doctor - and you're ahead of the game already by having a proactive doctor!

Take care -

Patze

[Wynter]

Patze,

In May, before I had the lip biopsy, the rheaumy that I saw wouldn't diagnose me. I sort of understand because at the time, I was only exhibiting dry eyes and mouth. He said it wouldn't change my treatment as I am using Salogen and the usual visual treatment with plugs and Restasis. At the time, I was suspecting some neuro issues, but it was mild.

A couple of weeks ago, the neuro stuff got a little worse and at the same I started to experience hip and heel soarness (never had that before), so my primary care doc highly recommended the biopsy and scheduled me with a neurologist for August. My neuro symptoms are sensory. The primary doc called it parenstesia or something like that. I am taking 300 mg twice daily of Neurontin and it helps. As for the hips and heels, they feel better.

I suspect I will be like you and have a negative biopsy, as my dry mouth isn't that bad. My primary is willing to try Plaqeniel, but wants to send me back to the same rheamy. I am not going back to him. A friend suggested the doc her husband sees, so I will get a referral to him if needed. I really like my primary care doc, but he's not an expert and can only give me basic care.

I live near Huntington, WV, so the hospitals aren't that big. If I have to I will get a referral for Johns Hopkins or Cleveland Clinic.