Bad news from scan-

[allium]

Hi everyone.  You all have been patient giving your support to me as I have gone from useless doctors and useless tests, while continuing to deteriorate with neurological symptoms, cranial neuropathies, stomach problems, eye problems, massive pain and sicca.

A recent gallium scan has shown a large area of inflammation/infiltration within my right parotid gland, which now is quite sore and rather swollen.  The doctor is now suspecting neurosarcoidosis instead of Sjogren's, given my many cranial neuropathies, facial palsy and other symptoms I have had all along.  Not a single doc has recognized this until now; it took one word on the internet (sarcoid) to bring up most of my symptoms.

I am supposed to have an intense T3 cranial MRI series ( doc should have ordered it Monday, didn't and now I have to wait until they get around to it).  It's quite possible for the moment that my parotid gland will have to be biopsied, since this is where the obvious area of inflammation is.  The MRI might show other areas (as in brain and ears, which I know something is been after).  The scan didn't show anything in the rest of my body, but it seems there has to be a largeish area to pick it up.

This could still be diagnosed as SjS with the biopsy, but I'm pretty terrified of the other thing.

Has someone had a parotid biopsy done, and can tell me about it? I've been afraid of getting the lip one done; this seems much more risky and involved.  What doctors will do this, and is it gen. surgery?

Thanks, folks.
Sheila

[BonusMom]

Sorry to hear about your recent test results, but hopeful that you're now on the right track.  I've not had any experience with a parotid biopsy, so I'm of little help. 

Please keep us posted.

[Katybarstool]

Sheila

I'm really sorry to hear your news. I can't offer any words of wisdom either, but just wanted to hold your hand for a while.

Keep your chin up. We are all batting for you.

Kathyx 

[ohiolady]

Sheila,

So sorry for all you are going through.  I don't have any words of wisdom but I hope it helps to know we care.

Anna

[Chana M]

Sheila

Of course you're terrified; you're perfectly entitled to be overwhelmed by this news.  To go from 'limboland' to a whole new and scary world is a huge thing to happen.

To add to all that you get the news from a doctor who has been undermining your confidence and dismissing your symptoms for so long!  You must be really tempted to write to all the doctors you've seen and encourage them to do some research into sarcoidosis.  And maybe retrain in parent care?

The symptoms of sarcoidosis are so similar to SjS that it seems strange that both aren't investigated at the same time in every case.  I know it's hard to find any good news in this but the fact that the Gallium scan didn't detect inflammation anywhere else - particularly your lungs - has to be cause for relief.

Sorry I don't have anything specific to say that can help with the biopsy issue.  I just wanted to reach out and offer a little support.  Hope you feel like chatting on Wednesday.

[kimbo]

Sheila,

I hope some one can answer your question regarding the paratid biopsy, because that is a question I have been curious about also.

I also have paratid issue.

Prayers for you, kimbo

[Scottietottie]

Hi Sheila   

I've just been trying to find a thread to do with protid gland biopsies because I know there are people who have had them but I couldn't find one that actually says what its like.

I guess the main thing is to get an accurate diagnoses and get some appropriate treatment.

Being scared is an absoulutely natural reaction. Knowledge is power though. Eventually the fear will subside and you'll be in charge - not the illness.

We're all here to support you - SjS or not.

Take care - Scottie 

[allium]

Dear BonusMom, Kathy, Kimbo and OhioLady;

THANK YOU......you don't have know anything about the biospy aspect to help.  Your responses mean a huge amount to me.

Chana, your insight is always right on and a great support as well.  I agree about sarcoid and Sjs being very close symptom wise (neuropathies, neurological, pain, dry mouth and eyes, parotid and gland swelling, eye diseases, hearing, numbness) and hope that perhaps someone might be helped by knowing this, esp/ if they have neg. blood tests or inconclusive lip biopsies and are being dismissed.  MS is always called the minic of Sjogren's, but docs should have an awareness of this too.  Nine doctors since May, same symptoms, not a fig until this guy (who I think might be the one with three heads or too many assistants).

Scottie, thanks for the info about past threads (you are too cool to try for me).

You peeps are the best in the world..xxxxxx
Sheila

[genko_b]

Hi Sheila:

Sorry to hear about the sarcoid diagnosis. As you learn more I'm sure they will be presenting you with treatment options. Like Sjogren's with CNS involvement, it is a little more complicated to treat primarily because of so little experience treating it.

My brother had sarcoidosis for most of his life (can you tell I'm from an AI prone family?), and it seems like they were always coming up with some new things. Linda is out now but she also has sarcoid and you should be sure to ask her about it.

Genko

[wednesday mc haggis]

shiela

terrible time not knowing, imagination running riot, and fear into the mix, pretty rough time , scary and deeply upsetting, but youve gotten this far, and you ll get throught he enxt step, all were all routing for you, your in my thoughts and i truly hope they get the referal done soon for you and get to the bottom of all this, be well and come ehre to offload, we cant change much but we cant listen

T x

[pudmott]

Hi Sheila (aussie woman)

Nice chatting with you today. Im sorry to ear that you are going through some scary times right now. Its hard not having definates and lots of possibilities none of which you want.

I hope they figure out what is happening with you and get to having some treatment that will help.

remember your family will alwys be here for you


Pud (for you i'll fly out the lear jet)

[homersmom5]

Hi,
While researching my own parotid gland issues , I read about parotid gland biopsies. There are 2 types: a needle aspiration biopsy and a surgical biopsy. They usually start with the needle biopsy because it is less invasive. I read that they numb the area with a topical cream before stickking you. Good Luck! You are in my thoughts and prayers.
Homersmom

[irish]

sheila, One of our moderators, Linda196, has sarcoidoisis and sjogrens. If you send her a personal message she may have time to email you back and answer questions.

Try to relax about the biopsies---none of them are fun, but they will deaden the areas for the needle biopsy and do the surgical one under anesthesia. So many of the tests we have done are nearly as painful or eventful as we think they will be. It is good that you found a doc who is checking you for all these things. Irish

PS, I was just thinking about all the stuff I have had done--EMG(needles in muscles) many surgeries, urethral dilation and nothing was as bad as the septoplasty and turbinotomy(deviated septum surgery) that I had done. I don't take much for pain so when I have pain I walk a lot. I almost wore out the carpet that time.

[allium]

Peeps. your replies are fantastic. 

My MRI series is scheduled for this Sunday, the 8th.  Not sure why they are open weekends, but I'll take an earlier time. At the moment, my paritod area is so sore under the front of my ear, I can't turn my head well.  I've broken out in a queer sort of rash on my chest, trunk, and back; maybe plaquenil related, but I wonder if there is a vasculitis thing going on too.  Not sure how you tell the difference in a galluim scan from a tumor and a inflammed area, but the thought keeps coimg to my mind.

I've been told the MRI will take at least 90 minutes to do .I have a Rx for Ativan, but they said one or two.  I think at least three, perhaps.  Don't worry, I don't fall alseep unless they are purposely trying to make me do so. I'm afraid of the screaming clausto Mimis and my arthritic neck/back  laying there that long.

Irish, I've got a deviated septum, from a car accident.  I could get it done too, but another surgery is not something I want to so if I have to.  Esp. the way you put it.  Need breast reduction surgery too, but let's wait on that as well.  They can just keep not taking me seriously for a while longer.

Hoping that there will be a needle biopsy proposed instead; will see doc on Monday.

Sheila xxxx

[irish]

Sheila, I have had 2 MRI's of my brain and it does last 90 minutes. The best way I have found to make it through this i to keep your eyes shut. The techs will get you all settled and will strap your or position your head in place with sand bags, etc. Also, make sure they put a pill or wedge under your knees or you will really suffer from back pain.

Also, both times they had a radio and asked me what station I wanted to listen to and that really does help. It also helps to do self hypnosis. In other words positive brain talk to yourself. If something starts to hurt(I find that my arms are what get the worst aches and pains) you literally have to put your mind elsewhere and concentrate on something else with imagery. This really does help with anything. I had so much dental work in my life starting at age 11 that I learned to do the imagery to keep me in the chair--even with the novacaine.

I will keep you in my prayers and hope that they can get this all sorted out and find medication to alleviate many of the symptoms. Good luck. Irish