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Sjogren's Syndrome Support

Debbie from the United Kingdom has joined us- Hello and welcome!


#1

@Debbie

Hi there, Debbie

Welcome to Sjogren’s Syndrome Support. We are happy you found us here at Ben’s Friends!

Thank-you for providing us with a snapshot of your story. It is clear that you have been through so much. I am so sorry that you have dealt with such unbearable discomfort. How awful. It sounds like you have received some answers but are awaiting more which will hopefully come in the near future. Do you have an eye specialist appointment booked? How are you feeling about your upcoming lip biopsy?

If you have looked around the site you might have discovered the search icon (magnifying glass, top right). This is what I use to browse through existing topics. You can also create your own threads by clicking + New Topic tab. This is a great way to ask new questions, share your story, and connect with others.

As always, we are here if you have any questions or concerns.

Hope to hear from you soon,

Danielle


#2

Hi Danielle,

Many thanks for your welcome, it’s great to find a welcoming support group.

I am having my Sialogram this Friday coming and I am hoping to find out a little more, I wish I had asked what they found on my ultrasound scan but I was a little nervous to ask, they said it looks like Sjogrens on the ultrasound and took loads of measurements and images. (I would point out that it is only my right parotid gland that is affected- is this normal? should it not be both if it is Sjogrens?.

I think they have requested an eye specialist appointment but I am not sure when that will come through.

When the doctor saw my ultrasound results he said this is urgent and my appointments for my lip biopsy and Sialogram are scheduled within 2 weeks? My question is why would this be urgent, from reading all the group posts I cannot see why its classed as urgent, the NHS usually make you wait months for any appointments.

He also had my Autoimmune blood test results at the same time and said that they needed to do more tests on these.

so next week Friday 21st I have my lip biopsy, yes I am a little nervous I hate the thought of having my lip cut open, I am supposed to be going away on the Saturday to spend Christmas with the family and reading some of the posts on here has made me wonder if I will need to change my plans.

Debbie


#3

Hi Debbie… welcome. Sounds like a lot happening in a short time. He may well want to be sure he can rule out other things. And seriously, it may be good that he deemed it urgent to get to the bottom of rather than wait for months. It sounds like you have been really uncomfortable. I am sorry to hear that. Hopefully they can get you on the road to relief soon.


#4

Hi Debbie,

Thank-you very much for your message.

How did your sialogram go? Did you get a chance to ask your physician about whether or not it is common for Sjogrens to impact only one parotid gland?

How did the lip biopsy go on the 21st? Do you feel fairly comfortable, or is healing still in progress?

I am sorry to send so many questions at once. I hope you have had lots of R & R recently… and I hope you keep us updated!

Danielle


#5

Hi Danielle,

Thanks for your message, and happy New Year to you and your family.

Sorry for the delay in the reply, I have indeed been resting and relaxing, back to work now though.

The Silogram showed a growth deep in the parotid gland, it was small but obviously caused a blockage, the doctor doing this said it was not going to be easy to get to but he will report to my Maxofacial doctor whom I am seeing at the end of the month.
The doctor said showing me the images that it looked like a cyst but when I googled a parotid cyst it also referred to them as a tumour? have you heard of this?

I had the lip biopsy on the 21st of December and they said they are fast tracking my results. This is unusual for the NHS in the UK.

So when I go back at the end of the month I should have all my results and find out what the plan is moving forward.

Over Christmas my other parotid gland started hurting which is unusual, they did scan both initially with the ultrasound so I am going to ask about that one as the ultrasound showed ‘signs on Sjogrens’ so the doctor said, I’m not sure if that refers to the growth.

The lip biopsy was okay and painful for a couple of days, I had five stitches which de solved and also fell out about five to seven days later, it feels fine now.

Can you shed any light on the parotid cyst-growth-tumour?

Looking forward to hearing from you soon
Debbie
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