Great Doctors and the continued Thickening Plot

[RedFlame]

I had my appointment with the Rheumatologist yesterday.  My PCP had referred me to look into Sjogrens because of my chronic Parotid gland swelling and other things.  

He performed the Schirmer test.  That test is placing two strips of paper in each eye and then having the patient close their eyes.  Normal is greater or equal to 15 millimeters and mine was 1, but of course there are other criteria.  

He sent me over for an x-ray because he was suspicious of Interstitial Lung Disease, something that I don’t even want to think about right now so I will deal with it later.  When I got in my car I began to cry a bit about that as I am out of breath much of the time.

I go back tomorrow morning for two biopsies.  One of the Aphthous ulcer that I have had now for 6 months and then he will biopsy the salivary glands.  He was quite concerned about these and didn’t even want to wait until Friday for the biopsies.  Quix has been very direct and firm in her concern about these things.  It has taken time, but finally a doctor is following through.  I was just so tired.   If only Quix could be our physician!

He ordered massive amounts of blood tests.  Ten vials of blood were taken for a host of things I didn’t recognize. He even ordered an HIV test, he asked if he could ---it’s highly unlikely.  

After the biopsies I go to see the neuro-opthalmologist assuming I can make it through the snow.
Thanks to all for all the support you have given.  You are the best!

Red

[RedFlame]

Thank you so much for all the information.  It helps to know what it is and to be able to talk with you.  I will private message you tomorrow.

Hugs,   Red

[RedFlame]

For those who wanted the update--

My salivary gland biopsy went well today.  It wasn't painful at all and only took a few minutes.  I'm not sure when I will have the results.

I thought he was doing the biopsy of the oral ulcer but he had actually referred that part out.

My lung x-ray was fine thank God.

He had tested me for the Behcet's disease gene which I do have.  Not sure where that will go.

The neuro-opthalmology  visit was a disaster.  A 5 hour long drawn out ordeal with many residents with endless redundant questions and tons of tests.   I felt like I got absolutely nowhere.  I don't think they were ever on the same page with each other.  I felt like I was in an LSD trip.  The 5 or 6 minutes I had with the famous doctor was spent with me re-directing and re-iterating why I was there.  He kept talking about eye exercises when I finally got him to shut up.  I asked him about my driving problems.  He said I was fine.  I said "so the other cars really are coming out of nowhere"?  He said, "no.....you just arent concentrating".  

I kept trying to get up while he kept asking me more repetitive questions about which doctors to send his report to.  He finally gave me the paperwork packet to take to check out.  I threw the packet in the trash.  I can't believe I did that.  

I'm pretty discouraged about the vision issue.  The Kellogg Center is a brand new state of the art multi-million dollar 'place'.  Of course they know what they are doing----I guess this means I can drive full time now?  

Any thoughts, experiences or suggestions?  greatly appreciated.

Thanks guys!

Red

[anon07072023]

I hope all goes well....
-Kelly

[slightlybroken]

So glad your getting somewhere!

The salivary biopsy that you are getting (also known as a lip biopsy) will more accurately show whether or not you have Sjogren's or not with the combination of your patient history, and other Sjogren disease markers (dry eyes, dry mouth, swollen salivary glands). The blood test doesn't always come up positive in all patients ( the SS-A & SS-B). My mother has primary Sjogren's and she has had it for 10+ years and the blood test is still normal.

The only difference between primary & secondary is..primary is when you have Sjogren's and no other auto immune disease. Secondary is when you have another autoimmune disease (ex.lupus, RA, Scleroderma, etc) present prior to Sjogren's..but it's still treated the same.

My mother was diagnosed through a salivary gland biopsy. The classic signs they are looking for is lymphocytic infiltration & chronic inflammation of the minor salivary glands. In my readings there is only 2 diseases that can effect the salivary glands (Sjogren's & Sarcoidosis) and these 2 diseases can both attack the lungs, but Sjogren's looks different as far as the biopsy.

Sjogren's is also known as a perfect MS mimicker. It not only can involve the CNS and put lesions on your brain, but it can put lesions in your spine. It is one of the few disease that can.

My mother is now on symptom treatment & Plaquenil which has helped a great deal. The biopsy isn't that bad..I had one as well (I didn't have Sjogren's). I hope you get some info from this and if you need any info about Sjogrens...feel free to contact me.

I know my mother has had issues with vascular, stomach, eyes, muscular, glands...just to name a few.

Take Care

[wiggles94]

Hi Red and glad you are getting some help from the docs!

Hang in there and I hope you get some answers soon!

[texasgirl150]

Hi Red! I'm. So relieved you found a doctor that is taking you seriously and further, is taking some action! It is long overdue.

I will continue to keep you in my prayers. Hugs!!