Just got my lip biopsy results officially!!

[seren]

Hello everyone,

I saw the rheumatologist today and I am definitely positive for sjogrens via the lip biopsy which showed mild to moderate lymphocytic infiltration of the salivary glands.  I knew this last week as my dentist phoned the maxillofacial ward, but I wanted to be sure and hear it from the 'horses mouth' so to speak  

I am feeling so low today so feel pretty underwhelmed at the news altho grateful I finally have a diagnosis.  The rheumatologist said as I have no anti-ro the sjogrens is not serious and there is nothing he can treat me with.  He knows I am using gel tears and drinking plenty (hate artificial saliva) and taking pain killers.  He made out there was no treatment, of course we all know different (couldn't be bothered to argue).  I am ok with this as I do not want treatment, I feel the longer I can do without the better, even tho I feel pretty awful most of the time.  He does not want to see me again unless things get worse, he also said I had peripheral neuropathy...well I already knew that.  He was not the least bit interested in the fact  that altho at times my mouth is very dry, there are times where saliva 'pools' at the front and several times daily I dribble.  I know that this is not normal but he didn't seem to be concerned

So onward I go....I do have a plan and that is to get my TSH back into normal range was 21.6 taken 6mths of treatment to get it to 11.4.  I need to lose some weight and when I get to me goal I am hoping that will make a difference

Just thought I needed to update everyone..take care all

Paula

[Chickpea]

Hi Paula

Thanks for letting us know.  It's always an odd time when you finally get a diagnosis: a mixture of relief that you have a 'name' for your symptoms, and worry about what it might entail.  Just remember that you're still you - dribbly mouth and all! - whatever the label.

It's good to have a plan but also to be open to new possibilities.  Treatment - especially with Plaquenil - can slow the development of SjS symptoms and make your daily life that much easier.

Thinking of you - Chickpea

[jonnell]

Hi Seren,  Glad you finally have a diagnosis, not that it makes it any easier, but at least your not in limbo land.  You are in my thoughts and prayers and hopefully you will be able to look up from here.   Hugs and Kissess    Jonnell and Jenna

[lynnmarie219]

Hi seren,


I'm glad that you have a name/reason for why you are feeling the way that you do now, although I'm sorry that you have ss!

I agree with Chickpea.... try to be open to treatment if and when its needed. In addition to the plaquenil, there may be other medications to help your symptoms and pain. I lived with a lot of symptoms much longer than I needed to and although I hate taking medication....I believe they help the quality of my life!

Just my opinion....take care!

[seren]

Thank you all for your replies and advice.......as much as I am glad to have a diagnosis, it takes some getting used to and it just feels like a bit of an anti-climax, all these months of research and persuading the Docs that something was wrong with me, its just a case of accepting it and learning to live with it now. 

I sound so glum don't I ?  sorry to sound so dramatic about it, there are much worse things I could have...I think I am just still a bit shocked but need to get my head around it all and I'll be fine...! 

Thanks again for your support!

Paula 

[eyeamdry]

Seren, I'm glad you have a diagnosis and you will be too.  It's better than not knowing and many people just can't seem to get the right tests, or their body isn't giving off the antibodies etc.  I was diagnosed with positive blood tests and then had a lip biopsy at the request of a rheumy who said I didn't have Sjs.  He just didn't run the right tests.  A better doctor ran all the tests necessary and it showed positive.  Lucy

[Shari]

Paula, without a firm diagnosis a lot of times your symptoms are ignored by the doctors and that can be so frustrating as you probably know.  If your current Doc does not seem interested enough to talk to you of your concerns then maybe tell him?her that to try and make a better patient doctor relationship. 

It will take time to wrap your head around this one....give your self permission to take all the time you need.  It's a hard pill to swallow.

[Patze]

Hi Paula,

Congrats!  I'm glad that you finally have that "answer", and once it settles in, you'll be glad too.  Shari's got a good point, at least now your doctors can't ignore your symptoms any longer! 


Patze

[lelole]

Hi Seren,

It's a weird thing to say to someone, but I am delighted for you! I know you were hoping for this.  It's just so nice to feel justified, and be reassured  you are not going crazy!

Don't be afraid to try Plaquenil, I was really worried about starting it, and although I had a bit of nausea at the beginning (think morning sickness), it has passed and I am pretty sure I am feeling the benefits already less than a month in... Also have you tried Biotene gel for your dry mouth? It's nowhere near as horrid as the prescribed stuff, it's got a pleasant sweet flavour...

You will feel a lot better once you get your TSH back down much lower but you know this already!!

Anyway, well done yay!!

Leah x

[seren]

Yeah...Thanks Shari, Patze & Leah for your replies, as for the better patient/doctor relationship Shari, my rheumatologist never wants to see me again unless my symptoms get worse, but at least like Patze says they cannot ignore my symptoms anymore..they have to take me seriously now...I know pretty much most of you already know what this is like

Leah, yes thanks, I am delighted too, sounds strange I know  .

I do feel better today, I saw the maxillofacial surgeon to check the biopsy scar and he said the numbness can last up to 6/7 months and the lump underneath the scar is 'fibrous tissue' that too should disappear over time.  I was also diagnosed with TMJ and feel relieved to know what the pain is (apart from salivary glands) that I have been suffering with so I have to have a mouth guard from the dentist now...I will be living there LOL for a while I have so much work that needs to be done.

The rheumatologist has said he will not treat me as I don't have bony arthritis and the anti-ro blood work, as apparently when you have those blood markers sjs is severe (my research does not concur with this  my neighbour has sjs & the anti-ro and she is definitely not severely affected), so plaquenil is not on the cards.

In any case, I do not want treatment at present and hope I never need it, but if I do, then C'est La Vie. 

Take care all 

Paula X