Diagnosis Part 3 (3months, many $ and I need help)

[GgcJap]

Hi all,

This may be a bit long and forgive me in advance but after 3 months and many $ I find myself just about over all of this.
It starts with the good news, I go into my doctors this morning and get the results of my scintigraph. I have no damage the saliva is building up in the gland but is a little slow coming out(Drs words not mine, I feel ITS BARELY COMING OUT) but even still the no damage was reassuring.
    I said great so what do we do now, and he replied and I quote"Your not sick theres nothing wrong with you(I went into immediate shock), Its not Sjogrens or igG4 RD so we just follow up" I couldnt help but reply what happens if it gets worse? If its igG4 RD then we need more tests soon because when it shows in major organs its too late. He said its not igG4 because he also got results(from another hospital) from my gland that was removed 2.5years ago and that also didnt show signs of igG4. So we dont need to do any more tests. And if it is Sjogrens then theres nothing we can do about it anyway. I then asked so if its not igG4 or Sjogrens then what is it? He said it could be igG4 but theres not much chance, it could be Sjogrens but we have nothing to confirm igG4 or Sjogrens or it could be......wait for it.....psychological and then proceeded to tell me in short that Im crazy(that maybe its all in my head or stress) for wanting to find out what this is, most people would just wait until something else happens. Where as I just keep looking at thats not normal.
     I told him I want a second opinion and then comes the good bit, He told me that firstly I couldnt get a second opinion and I should trust him(Trust his diagnoses of waiting until I get sicker!) and that he knows all the Doctors at the other hospitals anyway. Then he went on to tell me if I went to another Doctor then that would be stabbing him in the back and he wouldnt give me any medicine. Im not too sure but Im think thats black mail. So I made an appointment for 2 weeks time with him with the intention of going and finding myself a doctor that knows about Sjogrens, igG4 and has some degree of people skills. I have mailed a couple of auto immune/immunology sites regarding doctors and am waiting on answers, if I get any at all.

Is there anything else I can do? Tests etc etc? Cry maybe? Oh wait I cant even do that anymore.

I also decided after having my eyes checked that I would try the Plaquenil I imported at 200mg a day for a week and then 400g a day. I figure that if after a year theres no change I can stop and nothing gained nothing lost. I would like to ask everyone and I have read online what are some of the side effects, serious or not that I should look out for. Like I said I have read them but just incase theres something Ive missed.

Oh and I did get evoxac so I`ll let everyone know how that goes too considering the salagen barely works anymore.

Theres probably a shorter way I couldve written this and probably other things I wanted to say but my heads a mess at the moment and I just needed to get it out.

Thx in advance for reading guys.

GgcJap

[SjoDry]

GgcJap,

Welcome to our world. Most of us have heard the hypochondriac/cyberchondriac thing a time or five. All you can do is what you are doing, looking for a different physician. Is it possible for you to travel out of your area for care? Your doc all but told you it's the good ole boys club (and we docs talk to e/o). He has essentially told you it is his way or the highway. So it sounds like you are either at his mercy or you go elsewhere.

One thing that you can do is to research docs. I mean..you are looking at trying to be seen by an immunologist, right? Create a list of potential docs in your area (or out of) that you might consider seeing. Before making an appointment, look up each doc..look at papers they have written; what their specialty is; any patient care awards?, etc.

For example, when I researched my current Immunologist, I found that in addition to his regular board certifications, he is certified through The Academy of Pharmaceutical Physicians & Investigators & is a certified Physician Investigator. This told me that he is a doc who cares about getting the diagnosis correct. His patient care awards and high ratings from patients told me the rest of the story and that analysis was dead on. I have referred this Immunologist to a handful of other patients in my area who have all had the same positive experience.

Short of that, there is not a lot that you can do. As far as Plaquenil, you won't know until you try. I researched this med up & down, went to a site I like to look at, called: AskAPatient.com which is a site where patients give their responses to various meds (positive, negative & in between) and in general did everything I could do to research Plaquenil in trying to decide whether I should take it or not? The bottom line is that we are all different. None of us know how our body will react to a med until we try it. So I can read about how wonderful it is for some folks and how it is a nightmare for others...but I won't really know until I try it. That's why I bit the bullet and took it. I was one of the fortunate ones and it helped me greatly within 2 weeks.

I know you are frustrated and rightly so. It can be a very painfully maddening journey for us. Hopefully, you can fight the right doc who is committed to helping you find the answers.

Take Care.
SjoDry

[Sharon]

What an unbelievable answer! Not that your sanity is now in doubt- that's unfortunately a response I've come to expect from doctors when they don't have any answer. But the fact that he's threatening/blackmailing you in an attempt to prevent you from consulting with other doctors...that's just criminal! 
I never tell doctors in advance I plan on getting a second opinion...I just go and get it.
He didn't even try to explain why your saliva is "slow".
Many of us end up attempting to treat ourselves just like you're doing after our doctors fail us.
I think your plan is a good one. I was prescribed Plaquenil but unfortunately I could not tolerate it.
It's a good option if you indeed have SJS.

[GgcJap]

Hi all,
     @Sjodry: It is possible for me to travel out of my area for care(within reason). Essentially that's what he said, unbeknownst to him I've become used to the highway and am not afraid to drive it anymore. I will definitely try to research my doctors a little better this time. I have mailed the Immune society and am waiting for a response.

I'm trialling plaquenil as of yesterday and also switched from salagen to evoxac. I'm hoping to see a difference in time. I will have a look at askapatient.com. Thx

I am frustrated, but more amazed at some doctors here. I might need to take a little break before I start on the next leg of my journey, take some time to research and recover. I don't won't to make my condition worse. I will find the right doctor, as I've found it's just going to take time. I hope I have that time. Thx again.

     @Sharon: Unbelievable to say least. My sanity may come into play if I have to do this much longer. Yeah when I heard that I was already thinking he must be pretty desperate, also that I wasn't going to be seeing him much longer. He told me the same as my last dud doctor that there's nothing another doctor can do, I've already done it all. I thought I was having dejavue(not sure on the spelling). I won't be telling him again, I told him I'd see him in 2 weeks and still might, but the search is definitely on. I won't stop until I have the answers I'm looking for.
     He just told me my glands are fine, which I'm greatful for but only said that the saliva output is slow. I asked him to show me the paperwork and X-rays that he had and he said he'd show me but I wouldn't understand anyway.

If this is Sj?gren's then I am now doing all I can whilst in Japan anyway. Pilocarpine and Plaquenil. What worries me is that if it's not then there's other things I should be doing. First I need to find a doctor who will entertain the idea. Until then it's all me. Which isn't such a bad thing.
I'll keep you updated.

GgcJap

[Sharon]

Hope the Plaquenil kicks in- then you'll have your answer of "something autoimmune".
I remember reading that there are many autoimmune diseases that they do not know how to detect yet and don't even have names for, so there's always the chance you have an AI condition that mimics SJS but isn't exactly, which may be why your tests back negative.
Another option is to take a higher dosage of Prednisone and see if it does anything to improve your condition. Didn't do anything for me at only 10mg either.

[GgcJap]

Thx Sharon, I hope it works too. Obviously I'd rather this not be something autoimmune but it sure does look that way. That's the one thing that surprises me about all of this there is so little known about autoimmune disease and that's including the doctors. I'll have another set of blood tests in a couple of weeks so I'll have something to compare with. My current doctor wouldn't give me prednisone without me being in a huge flair and I don't want to get to that to find out. Although I would like to try it to be honest, the 10mgs wasn't great but did give me just a little saliva back. Just enough to make me wonder if I had been prescribed more would it have had more of an effect?

GgcJap