Positive lip biopsy!!

[Kathy57]

Dear fellow Sjoggies,

My lip biopsy is back already and I am sooooooooo relieved!!!  It's positive!!!  In order for it to be positive you have to have a focus score of 1 or greater than 1, and my focus score was 5.5. 

Now I can get another DMARD!  I'm so relieved!  Now my new Rheumatologist will believe me, I hope.

Couldn't wait to share the news!!!  My lip is swollen and I've got a pretty good bruise going on but it was worth getting it.

Thank you to everyone for your emotional and knowledgeable support.

Kathy

[araminta]

That's great Kathy, very pleased for you. 

[TTSandy]

I'm so glad that the results substantiate what you already knew to be the case.   I know how hard it is to convince some of these doctors when your blood work looks so good.  That's always been the case with me.
ANA was the only indication that I had something going on.  Luckily, I found a really good rheumatologist that didn't base everything on standard blood tests.   Good luck with your treatment.

[Scottietottie]

Hi
Good news. After the wait. better everyone knows what you are dealing with.

Take care - Scottie 

[meirish]

Kathy, I am so glad to hear that. You have struggled for so long and now you have PROOF!!!! Doesn't take much to make us happy sometimes, especially when we have to wait for years. Yippee!! meirish

Have to add that in 2003 a new rheumatologist told me to go get a lip biopsy. My very good and special ENT that I had since 1997 looked at me and said in a crabby tone "you don't need a lip biopsy". I looked at him and said in a crabby and louder tone "Do IT". He called me back in 4 days and quietly said "the biopsy was  positive". I said quietly "thank you". Pretty much the end of the conversation and our relationship went on as normal. He was so grea and good to me over the years and put up with all my ailments and tried to hard to figure me out.

In 2006 I saw him for something and told him I had just finished one year of meds for Mycobcterium kansasii. He was on his stool and pushed so hard he hit the wall across the room. He said  "you should not have that....only immuncompromised patients get that. Have I got a doctor for you!!" And he did.. He sent me to my immunologist who found my other autoimmune diseases plus my severely low t-cells that could have killed me. My immune dr told me I was as bad as an aids patient. The 6 hours of IVIG every month from 2006 to 2023 for my myasthenia gravis also helped my low t-cells.

 My Immune dr retired and I am now off IVIG due to chronic kidney disease stage 3B. I feel my AIDs are getting worse but IVIG and my dr helped my life all those years. So never give up hope folks. Sometimes it takes a long time to find THE DOCTOR who makes a huge difference. I didn't feel good and got slowly worse from 1964 till 2003 diagnosed with Sjogrens and 2006 when got my Immunologist who diagnosed myasthenia gravis, Hashimotos, severly low T-cells ands autoimmune hearing loss. The Bullous Pemphigoid (skin) and Sjogrens diagnosed earlier  (2002 and 2003) by 2 other doctors.

My husband was ready to quit running all over to the doctors all those years . I told him "fine, I will drive myself as I want to find out what they are going to put on my death certificate because it isn't in my head." He continued to take me to the dr. and I got diagnosed!!!! Thanks folks for putting up with me!!

[Scottietottie]

Oh Irish ..... putting up with you?

You are so valuable to this site. Your knowledge - your compassion - your perseverance.

you have been through so much - and sharing your experience with us has made a difference to many in here.

Hugs .... take care ... Scottie

[Kathy57]

Thanks Irish!

I agree with Scottie!  You are a Godsend for so many people here and including me.

Thanks for all your advice!

Kathy