update so far

[mysteriousmillie]

Hi guys
I posted here a little while ago at the start of my journey to see what exactly is wrong with me.  My GP referred to a Rheumy.  Since then I have had several rounds of blood tests (ANA was negative twice), Schrimer test was negative.  Next I had heart scan, chest xray, scan of my throat and neck, more blood tests (showed high levels of iron and B12 which is good, zinc was borderline) and finally last week a lip biopsy.  Really hoping that this is the end of all the appointments and blood tests.  Rhuemy said he didn't think I had SS (at our first appointment) but he wanted me to have a lip biopsy just to be sure.  I had the biopsy last week and the consultant struggled to get the glands out because they were so very tiny.  She said to me "It looks like Sjogrens to me", but obviously its the Rhuemy who makes that final decision.  When I saw the ENT specialist he said that a growth had been found on my left lymph node - it was only 6.5mm so nothing to worry about for the moment.  He also said that my salvia glands in my neck were permanently swollen and he too thought I would be diagnosed with Sjogrens.  Bloods tests form a few weeks ago showed an elevated ESR, RF and platlettes.  So I have an appointment with my Rhuemy on 30th November where I either will or won't be diagnosed with SS. I'm quite impressed with my Rhuemy that he has been so thorough as have the facial surgeon and ENT, I definitely feel like no stone has been left unturned.  Just got to wait now to see what exactly is wrong with me.

:-)

[Joe S.]

You can be serum negative like I am. The disease does progress and it does take 7 to 12 years from your first complaint to get a diagnosis. I wish you good luck on this journey. Not knowing is the first assault on our health.

[mysteriousmillie]

That's very true Joe.  I have been suffering some of the symptoms I have for many many years and its always been put down to my allergies.  I feel grateful that my Rhuemy is so thorough, so hopefully we can get to the bottom of this.  :-)

[Kathy57]

I am also seronegatve but haven?t had blood work in awhile.  My rheumatologist diagnosed me by my extreme SICCA symptoms.  He also felt like I did not need a lip biopsy just to prove it to him.  I thought that was nice as lip biopsies can be tricky, depending on who does them and who reads them.

I feel blessed to get treatment and a diagnosis which has helped me fight this.  Good luck in your journey, and most importantly, I hope you get proper treatment no matter what your test results show or do not show.

Kathy

[mysteriousmillie]

Thank you.

The lip biopsy wasn't pleasant, and although I was warned there was a small chance of permanent numbness I do have an area that is still completely numb, nearly a week later, hopefully the feeling will come back again in time.

The facial consultant, seemed quite knowledgeable in burning mouth, dry mouth and Sjogrens.  But it is my Rhuemy's decision I guess to diagnose SS.

[mysteriousmillie]

Unfortunately my biopsy site has become infected, so I am on strong antibiotics and still in quite a lot of pain.  The numb patch is still there and has spread a little down the inside of my lip.  My GP says they probably accidently cut a nerve.  29 days and counting until I am due to see the Rhuemy again.  Fingers crossed there's some answers for me there.

[Fortitude]

Sorry Millie that it got infected.  When I got a lip biopsy last year by my ENT, it was numb for close to two months and then gradually went back to normal. There is hope!

[irish]

I am going to add that it is not unusual to get infection in the site as the mouth is really very full of bacterial. I got a huge fat red pussy lip and placed a warm wash cloth on it for a while and it drained and healed. Just curious it the doc advised a warm pack.

Hope you heal up soon and get feeling better. Irish

[mysteriousmillie]

Thanks for your replies guys.  So happy to hear I might still get the feeling back.  No GP never said anything other than it didn't look how he would expect it to look and gave me painkillers.  I had been doing a salty mouth wash every day but it still got infected.  The antibiotics are definitely working now though and its starting to feel a lot better.