Not sure which is worse, dr's visits, or limboland

[Stillinlimbo]

Hello all
Just back from yet another disapointing visit with my GP. An appt I made, as a follow up, because if I dont stay in touch with him, I could just sit here at home and deteriorate before he' d call and say hey. Anwyay, we did the usual, "How's it going?" Same,,,,blah blah. I told him that I stumbled across this forum after being  diagnosed with dry eyes, and he wasnt real impressed with the idea that maybe I have Sjogrens. I told him that I made appt to have a lip biopsy this week, and he said, well, ok, whatever. Oh, yea and he said, no big deal, doesnt hurt. I hope he's right. So, I happened to look at some of my labs while he was out of the room, and most are normal, but my Alk Phosphonates is elevated. I asked him what that is, he said its part of the liver profile, and his usual "its a clue, we're getting closer" . Why did nt he tell me that? So, I dont know? Does this mean anything to anyone? He also gave me a shot of steroids, to see if it perks me up?
I am so disgusted.
Cathy

[Linda196]

Alk Phos is a fairly indiscriminate test, which can mean problems with either liver or bone, but on it's own it doesn't mean much. It's one of those tests that have to be considered in partnership with other tests to see whether it's a liver or bone marker.

A "shot of steroids to perk you up"? Without knowing what is causing your symptoms, steroids could possibly mask a symptom sufficiently to make diagnosis very difficult, until it's effects are totally gone. Please be sure to tell whoever is doing your lip biopsy about the steroid shot.

[Stillinlimbo]

Linda,
The doc said that also, might mean somethng with the bone. So, now, I'm home, and tired,.  headache and that shaky feeling from steroids. Didnt "perk" up yet. UGH. So, are you telling me that the steroids might interfere with the biopsy and/or results?
Cathy
I am so irritated, and frustrated today.

[JannaLee]

Cathy,

Well that's just dandy!  The steroid shot might ensure the lip biopsy comes out negative!  

I find it amazing how resistant doctors are to the idea of Sjogren's Syndrome and extremely frustrating he made a remark about getting "closer" to a diagnosis when he isn't willing to think about what disease you might have!?

I mean.....COME ON!!!!

If he would look it up, he would see you should be investigated for this and possibly diagnosed on symptoms!

The same thing happened to me but my doctor wasn't stubborn about it.  When I asked him to test me for Sjogren's he laughed and said he would do it but he was sure I didn't have it, more likely I had Lyme Disease.  You can imagine his surprise when it all came back positive for Sjogren's and negative for Lyme. I wonder how things would have gone if I were sero negative.  I am very sure I would have had to find another doctor.

Sweetie, you might just have to look for a new guy.

Janna

[Stillinlimbo]

Janna,
Did I mention I was irritated? because I'm not anymore, I'm livid now! So, basically, I might as well reschedule my biopsy then?
I just , words, cannot even begin to describe this ride. Unbelievable. AND,,,,,,i just got a slew of labs too right after the shot, will the shot affect them? As far as finding a new doc, i give up, I have seen 7 neuro's and have had 5 GP's since this started , none of them have helped me, they all acknowledge something is wrong, and they all have let me down.  I probably have one of the dreaded "marks" in my pt chart like on that one episode of Seinfeld where Elaine had a mark on her chart and no docs would see her. LOL
So, now what do I do? Oh my gosh................
Cathy

[hoping]

Cathy,
  I have also seen 6 local neuros, 2 or 3 neuros at Mayo, 3 rheumies, and have stuck with same GP, but he is letting me down now.  This started with neuro symptoms, so no one is understanding how it may be Sjogren's--since blood tests are fine.  Current rheumy seemed to consider it, but now is kind of dismissing it.  I have always been termed a complicated case, also pyschosomatic and other terms that leave a very bad taste in my dry mouth!  I indeed have the red checkmark on every doctor file and record.  My neuro appt. this week just got put off for another month.  Livid!
  I had 2 lip biopsies done at Mayo, first one they didn't get any salivary gland tissue, so repeated the whole ordeal the next day on the other side of mouth.  I would reschedule your biopsy as Mayo doc said Prednisone could makde test come out negative.  Prednisone shots may not last as long and are local, vs. oral Prednisone, so I'm not sure.  It's crazy.  Why is it always up to us, the patients who feel run down and cruddy to find out?
  My biopsy was potential Sjogren's, but not definitely positive for Sjogren's.  Yet they still will not treat it as such.  My labs were negative all the way around.  Prednisone shouldn't affect your blood work. 
Karin (delayed welcome to the forum)

[Stillinlimbo]

Hi Karin,
Glad to know I am not the only one in this nightmare. Well, not glad, but......
So, I just called the ENT office and was told the steroids will not affect the results , so now, I am totally undecided what to do, and feeling pretty shaky and angry, and cant deal with it at the moment, so, I dont know whether to cancel or go?
Aye! This is unrelenting. But, much thanks!
Cathy

[KYMOM]

Cathy, Sorry about your experiences with your GP.  It is hard if you are not comfortable with your regular doc.  As for the biopsy, if the shot will not interfere you need to do what is best for you.  Having an answer, if this will give you one, will make things easier.  For me it was the not knowing and feeling that my symptoms were all over the place.  I felt at times that I was either losing my mind or imagining things.  I would spend what seemed like hours searching the net to see if the symptoms that I was experiencing added up to something.  It is a wonder that I did not have the dreadful check next to my chart with all of the possibilities that I brought to the doctor's office.  Good luck with your biopsy and let us know how you are doing.  Roxanne

[Stillinlimbo]

Thank you Roxanne.

[navydad]

as far as some blood wrok goes,, take the ESR,, on its own,, it doesnt mean much,, its just a general marker of inflamation,, they do it because its cheap,, but its not very specific,, most general blood work give results for just that,, genral overall health, liver kidneys,, basic minerals, chloride potassium,, and a few other,, oh glucose being another one,, some may be high or low in ther reference range but unless there way out of the norrm they kind of overlook them and then tell you,, look your blood wrok came back normal,, so your not dying,, but you sure fel like you are

[cinmac]

Hi, I didn't realize steroids could effect your lip biopsy.  I had mine when I was full of oral steroids and it came up inconclusive which immediately sent me to psycho land in the eyes of the rheaumie I was seeing at the time, even though my Schirmers was a big fat 0.  He never asked anything about my eyes and mouth and said that the lip biopsy wasn't worth repeating at a later date.

If you're not crazy when you start, you will be when they finish!

cinmac

[Issey]

I have come to the conclusion that they just DONT KNOW what is wrong with us and so to cover their ***** and to make sure they get paid:) they fob us all off or are rude/sarcastic/patronising
What we could do with is someone to really highlite SS and do extensive studies/specialise in it - then maybe we will get a better deal - till then we can only stick together - pool our info - and tell these `experts' we are not being treated like hypochodriacs.
I am going to ask my GP to let me see all my medical records - I am going to sit down and go through them all - and take notes and maybe I will see more when all this c*** started.

Issey

[hoping]

cinmac and issey,
You are both dead on.  I've lived it for years and since I have clinical background (as a physical therapist) which they may or may not like, I am well-read with valid resources.  Eventually they had to listen as I firmly but nicely pronounced how I fit into the SjS criteria for diagnosis.  I think the rheumy is the best to make the final diagnosis, neurologists shy away from it or think they know it all (like Mayo) even when they're mistaken.  But yes, go back thru your records, just request them and see if you can get your own copies- or sit down and review the specialist's notes. You will be shocked to see how long ago doctors started spewing psychobabble about you.  Why they aren't just man/woman enough to say it to your face, is what I don't get.  Their stares tell us enough.  Now I put off going to GP for everything, which is ridiculous.

Yes, your Schirmers matters or vital dye staining, as does dry mouth and lip biopsy without steroids is worth repeating in my opinion.  And try through your dentist too, see if he knows who he might recommend for a lip biopsy.  He recommended me to an oral surgeon who said he did these all the time.  After talking to him, he was way more experienced than the PA of ENTs office at Mayo that did mine originally and couldn't get enough tissue, leaving me no choice but to repeat it the next day.  Then Mayo did not specify in numbers the results of the test, where the local college of dentistry I guess grades biopsies that Mayo can't.  All this info I came about later, thru the backdoor of my own investigating. 

Be an advocate.  It ain't easy though.
Karin