Diagnosis(part2) and questions

[GgcJap]

Hi all
     I posted this on the end or another post of mine Diagnosis but I also have a few questions I would like/need answered, if possible.

So I spent all day at the hospital and underwent blood tests for allergies(results on the 22nd), a salivary gland scintigraphy(results on the 22nd), eye tests, I'm ok for plaquenil, but do have scratches from dry eyes on the bottom of my eyes(apparently they start from there).
     I did get my blood test results(the first ones) back and was negative for SSA and SSB. My leukocyte(white blood cell) count was 100(I think that's x10 what ch would make it 10000 and a little on the high side? The only thing the Dr did mention to me is my igG4 is high at 154(can someone tell me how high this is?)
    Due to this he is now leaning more towards an igG4 related disease than Sj?gren's. I still don't know what to make of it all. He told me not to take plaquenil or any other supplements and come back in a week. In fact he said if I take plaquenil he won't be my doctor anymore. I really don't know what to make of all this. Plaquenil is not used here for Sj?gren's and I don't know if it's used for igG4 related diseases? Not sure whether I should already be looking for another Dr or not?

GgcJap

[irish]

Did you look up the primaryimmune org site. High IgG4 can be an immune deficiency which is not an autoimmune disease. It is an immune deficiency. People with autoimmune diseases can also have immune deficiencies. I have 5 autoimmune diseases and 2 immune dificiencies. The autoimmune issues, immune isues and allergies all are treated by immunologists. Having one of these problems such as Sjogrens can also be accompanied by one of the other two issues or possibly both of them. The subsets of the IgG all have a certain amount of mucus membrane involvement. Some of the subsets are more so than others.

There can be so many things going on and actually an immunologist is probably the doctor that can sort this out better. I don't know if you have one of these available to you there. The doctor you are going to sounds like he doesn't agree with the seronegative autoimmune disease theory. If I remember correctly the percentage of seronegative Sjogrens runs around 35 percent or so. Could be less I am not remembering very well. However, it is not a piddly amount. It is a percentage that is significant and these doctors around the world should be picking up on this as it is in the literature.

I hope that you can come to a decision as to how to handle your approach to this issue. All of us on this site have been in a position more or less like you. I had one doctor tell me I would be hard pressed to find a doctor in the state that would treat me. Now that was traumatic. Soo, hang in there and keep on pursuing a diagnosis. Good luck, irish

Most of the autoimmune diseases seem to have a fair amount of seronegative patients.

[GgcJap]

Hi Irish,

     I did have a look at the web site and did read some things about igG4 but I'll be honest with you I'm going to have to read it a lot more before I gain a real understanding. But from what I've read immunedifficiency should make me more prone to getting sick, catching colds? I don't get sick that often in the past or recently.....apart from whatever I've got now. :p
     Wow Irish you've got your own collection of diseases and deficiencies. A more serious question, how do you manage? I'm struggling with what ever it is I have now. Although half of my worry is not knowing what IT is.
     I'm not sure if there are immunologists over here, I could probably use one. I'll tell you a couple of things that worry me about my new Dr. He seems to want it to be igG4 related, which to me means he's not looking at the whole tree, just the apple, which would make it easier to miss things. Something I definitely don't want or need. And the second thing he told me was females always show positive for bloods if they have Sj?gren's and males sometimes show negative. It not often. My thoughts were is he lying to me so he can make me an igG4 study?
     That's all good and fine if it is igG4 but if it's not, the steroids he seems to want to treat me with starting at 40mgs(on a long taper from what I can tell)will only work whilst I'm on them and really I should be on plaquenil.
     I'll see what happens at my next appointment on the 22nd and make a decision from there. I really just want to find a Dr I can trust who wants to help me, not his career.

Maybe hard to do in Japan? I feel like the only thing I'm coming up with is duds.

Thx again Irish

GgcJap

[SjoDry]

GgcJap,

I googled to see if they have Immunologists in Japan. They do. It is called the Japanese Society for Immunology. Here is the link: http://www.jsi-men-eki.org/english/organizationl.htm
I think Irish gave you some good advice. It sounds like you need a good Immunologist.

You mentioned that you were spending a lot of time worrying about what it is you have. We have all  been there (or live there). Sometimes these symptoms & medical diagnoses are so intertwined, it is difficult to find a clear answer. I was anal about figuring out which thing was causing which thing for a long time. I finally realized that I was never going to be able to do that..not totally. The bottom line is treating the symptoms and getting to the best place of functioning that you can.

Your Doc needs to re-study the part about all females show positive for bloods if they have Sjogren's...not. Many immune-deficient patients (Immuno-deficient patients which also have autoimmune disease(s) can't even produce the antibodies needed for a positive blood result for Sjogren's & other AI diseases. I know this because I am one of those patients..and just shared a study on here last week with someone, which said this.

You are smart to question the diagnosis and make sure your doc is looking at the whole picture. There is a great book you might be interested in: The Sjogren's Book by Dr. Daniel Wallace. The book gives a great overview of what Sjogren's looks like in each of the organs/body systems. You can get it on Amazon or through the Sjogren's Foundation.

Stick with it. I hope you soon get some definitive answers.
Take Care.
SjoDry

[GgcJap]

Hi SjoDry,

     My greatest thanks for the research and link, I`ll have a look at them/contact them if possible on my next day off. Irish is always giving me good advise, along with everyone else on this site, something I very much appreciate. Dealing with people who have an understanding of how I feel and better still can give me huge amounts of useful advise and information is truly, truly something I am very thankful for.

     I do have that need to know personality, and worse still I have to know now. Patience is not one of my strong points, although Im quickly learning. Really I just want to know how to attack this problem/deal with this problem(both mentally and physically) and I cant do that until I know what this problem is. Also after seeing so many incompetent Drs over here Im not very trusting of them, maybe I should give them a chance? My current doctor has cut all my medicine and supplements and has kept me on 1 salagen a day(something I cant live with). He said he wants to see my condition at its worst on the 22nd. Good for him, bad for me. If he doesn't start treating the symptoms after that then I`ll have to think about sacking him and finding another. Not something Im looking forward to, but something I feel is necessarily to find my best place of functioning.

     Im sure my Dr does know that all females dont show positive for bloods and was telling me only because he wants to pursue the igG4 route and Im not fully convinced yet. My problem with this is the trust thing. Why does he seem so intent on pursuing one and totally disregarding the other when nothing he`s shown me can conclusively convince me? Or himself Im guessing, as theres been no talk of treatment at the moment.

I will have a look at the book and thank you for the information and support it really is appreciated.

I will get my definitive answers, whether that be sooner or later I wont/cant stop until I do.

GgcJap