Rhuemy appointment

[Justdave]

Well I had my Rhuemy appointment on Thursday, after hearing my complaints, looking at the sores on the roof of my mouth
and my dry eyes he agreed that it is most likely the disease attacking my tear ducts and glands.  He said with a Autoimmune
disease that sometimes happens.

We went over the sugarless gum thing and eyedrops, he offered steriod drops if I couldn't get the over the counter drops to
help.  He told me this happens to a few and that the prednisone would not help with it but the cellcept would but not until
I am on it for a bit.

I also was mistaken, I thought I had a diagnosis of UCTD but it's actually Vasculitis.  I wonder if I have vasculitis with secondary
Sjogrens or Sjogrens with secondary vasculitis. Hmmm, I suppose it doesn't matter.  Then there is the lupus thing becuase sunlight
destroys me really fast. I get so sick in direct sun.  I didn't bring up the Sjogrens because I didn't want to appear one of those people
who diagnosis myself over the internet but I will be honest, I want to stay informed over my health and that means learning things
from the doctors but also doing my own homework.


So I am still in the no Sjogrens Diagnosis position, but I am thinking I have it, if anything as a secondary problem.  Heaven knows it was getting worse daily until
I started the gum and eyedrop thing.


Doctors have a hard time figuring out what bucket we all fall, Though my Rhuemy is a great doc, very kind and thoughtful and he listens there is only so much
he can tell from bloodwork alone.  It seems diseases like SRS and Vasculitis fall under the big umbrella AUTOIMMUNE and where it settles after that helps with
some treatments but in the end it is a jumbled kettle of fish, a little of this, a little of that. I think as people we like things in neat little buckets so we can say that
is my pail, but in the end disease don't work like that, they go where they like and do what they want. All you can do is chase after them. At least most of the
treatments are the same,  that helps.

I am still learning, but the more I learn the better I feel. My biggest problem is limmits as my wife puts it, I still want to function like I was 20 and didn't have this problem, I want to pick up a rake and spend five hours in the yard in bright sunlight raking.  After about an hour though I start to get weak in the knees after two or three hours I am spent and need to go indoors like I ran a  marathon.

I think out of it all the nuero stuff is the worse, then comes the breathing problems (that's kind of important) and then being tired all the time. The Dry eyes and mouth I can counter fairly easily, that other stuff not so much.

[Scottietottie]

Hi Dave 

Hmmm. You need a Rheumatologist who really knows about Sjogren's. So saying - you're right that many treatments are the same for quite a spectrum of autoimmune diseases.

I couldn't even spend an hour in bright sunlight raking! The sun makes me feel ill even without excessive exercise - and I used to be a sun worshipper! 

I really sympathise with you feeling the limiting effects of this disease. I hope your rheumy can give you something that makes you feel somewhat better.

Take care - Scottie 

[beverley]

Golly I remember how those early days felt so well.  Please believe me when I say that it will eventually all fall into place and you will find that, yes you do have to compromise a little, but no you don't have to give up everything.  I have been diagnosed for nearly five years now and really I have only got to grips with it all in the last year.  Every time I have a flare, it is like the beginning all over again, but you do bounce back quicker as you learn how to cope.  Just be patient and don't push yourself to understand and handle everything all at once.  It will take time, but it will get easier.

Best wishes,

Beverley

[lynnmarie219]

Hi Dave,


I think you are right...we all want things in nice organized piles or "buckets" as you say..and that is  definitely not how AI's work!  I know I am like that...I want to have my answers and I want everything to make sense and fall neatly into their place....I learned early that this was not the way it was going to be, which I was not happy about! 


Keep on learning and educating yourself...just make sure you are using reputable places of information....then share it with your doctor. My doctors all know how I am and some even refer me to reputable sites and information sources and welcome my questions. I do know that this is not the case for many others though. I hope you and your doctor develop this kind of relationship..its good for all involved!

[bob212]

I was diagnosed a few months ago and this site has been a big help in keeping my sanity (or whatever's left!).  What struck me about your comment is the "doing too much".  I, too am going through that.  A few months ago I felt horrible.  My primary symptom is fatigue.  I started just taking it easy, eating better, tried acupuncture, yoga and omega 3.  Past few weeks I felt much better.  Then I had a few days where I just was being my "old" self running around, etc. and today am paying for it with the fatigue.  A friend with an AI disease has counseled me that even on days I feel relatively good not to push but to stay on an even keel.  Though easier said than done with a job and a life, right?

[irish]

Dave, Vasculitis is one of the things that goes with the Sjogrens. I am wondering if you could find a good article to print and take in on next appt. It would be good if you could sort of break him in (since he does know about vasculitis) and talk with him more openly. This is coming fro me , the one who doctored and argued with docs for more years than I can to think about.!!!!!

Also, the blisters in your mouth might possibly be related to another autoimmune disease that affects mucus membranes. Don't panic yet! Those of us with Sjogrens can have so many other autoimmune diseases and thankfully they can all be helped pretty much by the same medication. Oh, by the way, I believe, that the vasculitis in sjogrens affects the smaller blood vessels. And yes, the sun can really ruin life for us. It isn't quite as bad in the spring or fall when the days are cooler but when the heat comes along with the sun airconditioning is a lifestyle. Good luck. Irish

[Rostradamus]

 well JustDave Diagnosis is the big bear. ANA testing do when you are flared, bad symptoms. Sounds like yuo have UV sensitivity, that alone can affect ANA testing. Give it about two days to form the anti-bodies. Take pictures if you develope rashes from start and as it changes; red spots ,little blisters, rough patches on forehead or cheeks, side of eyes. Like  diagnosing poison oak, if the doctor sees it 10 days later, not much good.  Sjogren's Syndrome Foundation.com lists many symptome and has good starter info. The Lupus foundation uses WrongDiagnosis.com too: we're on a first name basis. Because the have one of the best symptom checkers, up to 7 symptoms at once is very helpful. Test reliability and the % of people diagnosedwho actually show positive test factors is very important. I have a chart from www.labtestsonline.org of AUTOANTIBODIES AND RELATED DISORDERS . Through time I've added things like % anti-SS-B 40%. only 40& of diagnosed Sjogren's sufferers have this antibody though it i one of the "difinitive" blood test. The lip gland biopsy, "the golden standard" is accurate 50% of the time with different lab techs concluding different results. They say, make sure the lab is experienced in autoimmune diagnosis. I've read the technical on this ,pagesand pages. So these are some of the problems of diagnosis. Advice, keep a diary, take pictures, download a complete symtoms list from WrongDiagnosis.com and date new symptoms as they happen , also note other symptoms or things not normal for you. Download info on things you wish to cover with your doctor .It can be fustrateing. The best refferals I've gotten are from people, not doctors. They haven't usually seen the doctor being referred as a typical patient. After over16 doctors, and two hospital stays (15 days the first time, $72,000 and no diagnosis) I know. And I had over 80% of All Sjogren's symptoms, and too many Lupus hallmarks which still haven't been adressed.  The web sites I've listed have diagnostic tests as well. Read, don't rely on just the doctors ideas and knowledge. Politely suggest, ask, "I found this article" and have a copy for him. Very best of luck. Any herbal help and tricks I'll be glade to share. Some Formal drugs help people alot.DrugsOnLIne.com , know what you're taking.