Follow up lip biopsy appointment

[Scottietottie]

Hi 

Last summer I had a lip biopsy done and the result was negative. I had a follow up appointment and the oral surgeon, that day, was pretty dismissive and said I definitely didn't have SjS but that he would see me in 6 months time. (Now)

I was expecting a very quick appointment and I really wasn't sure why he wanted to see me again anyway because he knew the biospy was healing well from last time.

He sent a 'junior' in (very pleasant young man actually) - he's probably a student as this is at a dental hospital where they train dentists - to take a history and to check my mouth out. He asked a load of questions. He said my mouth did not seem amazingly dry and I agree with him - by the afternoon - it is not. It is exceedinly dry when I wake up though and although there is saliva - and I know I'm lucky - there is not enough to eat certain foods that I used to eat because I cannot get them swallowed.

I pointed out that another part of the treaching hospital had measured that my eyes were dry. Again - not as dry as some - but dry going by the Schirmer scale.

After he took the history he went to get the consultant. He was in a much better mood than the last time we'd met. I got the opportunity to point out that I had been dxd by a rheumatologist and had not known anything about SjS before I was told I had it.

He had a look round my mouth and pointed some 'things' out to his student and said "I don't think you have Sjogren's but there are white patches in your mouth which would be more consistent with Lupus."      Whoopeedoo!

I'm going with my original rheumy even if I'm not seeing him anymore. He said Lupus/SjS overlap. I used to go to a lupus forum but feel far more at home in this one. I can identify with more symptoms here. I do hate the big question mark though. At least I'm being treated. He wants to do another saliva gland scan. I had one done a year ago. I don't really see the point - but it doesn't hurt - so I'll go along with it.

Thanks for listening. Scottie

[mews]

Dear Scottie

I see you had a saliva gland scan done, I am about to have one done on Friday the "scintigraphy". The Neuro is sending me for it...funny thing the rhume is fine with the diagnosis but the Neuro's...LOL they have to see it on paper over and over again. How did yours turn out by the way? Do they say they have shrunk, I don't really get what or how it works?

It's such a shame the way these Dr's treat us! They have us jumping through hoops on a daily bases. I will probably die of radiation poisoning way before they tell me everything that's wrong with me..LOL.

Stay Well All
Mary

[Scottietottie]

Hi 

The last time I had the scan they noted a small 'mass' probably lymph node in one parotid gland and otherwise my saliva glands looked 'a bit tired' but not destroyed. Quite honestly I don't think they will have changed much. My eyes and mouth haven't changed much for about 6 years. Aches, pains and neuropathy have. I'm just waiting for them to blame it on 'ageing'! When I was younger it was 'hormones' and then 'menopause'. I'm sure they approach male aches and pains differently!!

Good luck with your scan.

Take care - Scottie 

[irish]

Scottie, Well, that was an interesting appt wasn't it. I am glad that things are not "terrible" for you. I would bet that you still have a "touch" of sjogrens even if no positive blood work.

No matter what we won't let you leave us, girl. Please make sure to stay and continue to share your life with us. You are a keeper. Irish

[lynnmarie219]

I can definitely understand the frustration of not having a definite diagnosis/answer......but like you said...at least you are receiving treatment! 

[eyeamdry]

I agree with Irish.  No way you can go away now.  Let's hope you have nothing additional.  Lucy