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Mouth problem and Scleroderma


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33 replies to this topic

#21 Amanda Thorpe

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Posted 17 June 2011 - 04:19 AM

Hello Caz

I'm sorry that this problem has come back albeit in the other gland. At least you know you'll soon get permanent relief!

Take care.
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#22 Elvis

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Posted 18 September 2011 - 06:10 AM

Hi ,just an update on this post.

I had my right submandibular gland taken out in December 2010 and I had my left one out in July 2011. When they did a biopsy on the last gland they said that I had secondary Sjogren's (I still can't say Sjogren's properly!)

The Maxillo Facial department wants to keep an eye on me as all my saliva glands were inflamed at my last appointment.

#23 Shelley Ensz

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Posted 18 September 2011 - 06:42 AM

I'm sorry you have had to have both of your submandibular glands removed. Here are some warm hugs for you:
:emoticons-group-hug:
It is pronounced "show grins". Like it is something to smile about? :emoticon-dont-know:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#24 Joelf

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Posted 18 September 2011 - 08:21 AM

Hi Caz,

Sorry to hear that you did have to have the other submandibular gland removed but hopefully now the problem will be resolved.

Never mind if you can't pronounce "Sjogrens"; I couldn't pronounce "Scleroderma" when I was first diagnosed and as for spelling it.......!! ;) :lol:

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#25 Amanda Thorpe

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Posted 19 September 2011 - 09:27 PM

Hello Elvis

I hope getting rid of the glands lessens your problems! When I was first diagnosed with scleroderma systemic sclerosis I had to write it down for my husband so he could remember what it was when people aksed what I had been diagnosed with! You get introduced to so many weird 'n' wacky words to pronounce it's almost like learning a new language!

Take care.

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#26 Elvis

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Posted 02 January 2012 - 05:22 PM

Just an update on my mouth problems. Having problems with repeated infection in my Parotid saliva glands,throat infections and oral thrush. I have an ultrasound tomorrow on my neck so I'm hoping it can tell me what is going on. I feel that secondary Sjogrens symptoms have increased-now I have to use artificial tears several times a day and my skin has got much much drier.

#27 Amanda Thorpe

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Posted 03 January 2012 - 04:57 AM

Hello Elvis

I'm sorry your symptoms are worsening and hope the ultrasound comes up with some useful information. I know a few people with Sjogren's Syndrome and it's no fun to live with what with artificial tears and saliva, you have my sympathy for sure.

Take care.
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#28 Joelf

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Posted 03 January 2012 - 11:49 AM

Hi Elvis,

I am sorry to hear that your mouth problems seem to have worsened. Thankfully, I don't suffer with Sjogren's but like Amanda, I do know of a few people who unfortunately do and it sounds really horrible and unpleasant.

I do hope that having the ultrasound will enable your consultant to suggest something to help with your symptoms and make things a little more comfortable for you.

Best wishes,

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#29 Hannie

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Posted 17 October 2012 - 09:09 AM

Hi Elvis

I read with interest about your mouth ulcer; you may have posted this a long time ago but I haven't been logging in for a while. Happened to me to, had a biopsy done, and found to have lichen planus in the mouth, which is common in immune deficient diseases such as Scleroderma, ask to have it checked out as there is a lot that can help. I attend Prof. Porter's clinic at Eastman Dental Hospital, a lovely man who has a special interest in Scleroderma. I don't know where you live but you can ask for a referral from your dentist?

Food for thought!

Hannie

#30 Amanda Thorpe

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Posted 17 October 2012 - 12:38 PM

Hello Hannie

Thank you so much for this post because prior to it we didn't know that there was a scleroderma expert at the Eastman Dental Clinic, let alone his name and demeanour. This is so helpful!

May I ask how you ended up at this dental hospital, including who referred you?

Take care.
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#31 Joelf

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Posted 17 October 2012 - 01:44 PM

Hi Hannie,

Welcome to these forums!

I'm very pleased to hear that you're receiving excellent treatment for lichen plantus from the Eastman Dental Clinic and that you have a knowledgable dental consultant dealing with you.

Do please keep posting and let us know how you're getting on.

Kind regards,

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#32 Elvis

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Posted 22 July 2013 - 05:39 AM

Just an update on my saliva glands and Sjogrens.

 

Infections (usually in parotid glands) have settled down. I still get the odd one though. Under the care of Maxillo Facial and Eye Hospital to manage the symptoms.



#33 Joelf

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Posted 22 July 2013 - 08:41 AM

Hi Elvis,

 

Thanks for giving us your update.

 

I'm very pleased to hear that the infections in your parotid glands have settled down and I do hope that the occasional one will not be too troublesome.

 

Kind regards, 


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#34 Amanda Thorpe

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Posted 22 July 2013 - 10:59 AM

Glad to hear the condition is being managed at least!

 

Take care.


Amanda Thorpe
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