Here we go round again

[gphx]

Saw a rheumatologist with naive great hopes today. He basically said my eyes and mouth are profoundly dry but the test results are 'odd' and I'm seronegative so he had nothing to point to in order to justify a particular treatment. He told me all about Prednisone, Plaquenil, Methotrexate, etc. then didn't give me any. He ended up suggesting I see a neurologist in search of an explanation for what he said were obvious neuro deficits because Sjogren's 'doesn't typically' manifest with neuro symptoms. This would be my third neurologist. At least the 'ologists' always recognize I'm truly having some serious issues and don't just tell me to take vitamins like my pc.

Can't tell you how many times I've been shuffled off to yet another doctor without answers but you may know from your own experience. All seems futile at the moment but I guess I can muster up enough energy and resources for another try to two.

Have a good holiday season, whichever you celebrate everyone.

[ohiolady]

Ugh, this sounds all too familiar.  My rheumatologist would not recognize neurological symptoms as part of Sjogrens.  It takes so much of our time and money to go to doctors and when they just shuffle us around, it can get quite frustrating.  Hope you get some answers from the neurologist.

Anna

[Prairie Gal]

Some Sjoggies have gotten more help from their GPs than from their rheumatologist.  Just a thought...can't hurt to ask.  May also depend on your relationship with your GP and whether he/she is a caring person.

[Patze]

Gosh, it does sound familiar!  Thankfully the rheumy can recognize things, and promptly tells me to go see this specialist or that one, and that's where things tend to get goofy.  Isn't anything easy anymore?


Patze

[Carebear]

Sorry to hear about your appointment today, gphx.

My rheumotologist also told me that Sjogren's did not cause my cognitive deficits.  My neurologist wrote him a letter, stating that it did.

Thanks to the neurologist I'm on Plaquenil...I don't think that would have been the case without her support.

Go see that neurologist.  Maybe he or she will provide you with another piece of the puzzle.

[Carolina]

The problem is when you're sero negative, then you don't have Sjogrens.

Even if you have everything that IS Sjogren's.

AND half of the things that the doctors don't even KNOW are Sjogren's.

It is soooooooo frustrating.

My neurologist has decided that my neurological problems are caused by nerve damage from my disc degeneration in my spine, in his humble opinion.

What causes my dry eye dry mouth?  Or my intersititial cystitis, or anemia, or sweating, or other problems.

Oh, that is old age.  Don't get to be 68 without sero converting, cause you'll just get brushed off as a cranky neurotic old lady.

Sigh.

It's bad enough that most medical professionals don't understand the co conditions of Sjogren's.  But if you don't even have THAT diagnosis, you are just shunted off.

However, my consolation is that I'm not sure any of the medications that might be prescribed aren't worse than the problems I'm having.

So I'm biding my time.

I'll probably croak without any sort of definitive diagnosis.  I'm surely NOT having spinal surgery.

Keep us posted, please, gphx.

Kisses

Elaine

[gphx]

I think Carebear is on to something. If I can get the neuro to tell the rheumy Sjogren's does indeed cause neuro and cognitive issues that'd be something. The rheumy even told me I'm the wrong sex to have Sjogren's. He was just looking at statistical likelihoods, but still.

Carolina, you're right on too. I do have some disk and stenosis issues but no one seems to think them severe enough to account for my neuro issues. When I tell them a physician on Sjogren's World says SS can mimic the effects of degenerative disk disease they just ignore it and keep on talking.

Maybe I should print out the Sjogren's World articles on neurological and muscular manifestations. To me it is so easy to accept one dx that explains a whole universe of problems I have rather than a separate disease for each and every body part. I'll see if I can convince the neuro. All it takes is one advocate I suppose.

Thanks to all for their support here. Sometimes a smile and a laugh is all you need to keep going.

[eyeamdry]

If your GP will help you, go with him.  I depend on my GP for a lot of things.  Some GP's are not so friendly and cooperative.  Lucy

[gphx]

My GP is useless as anything but a referral writer and bill collector unfortunately. As I said he has yet to do anything but tell me to take vitamins.

[navydad]

Seems like a lot of us get the shuffle,, its frustrating when your so obviously sick,

Elaine,, I;m like you,, I;ll end up croaking and when they do a cut up there going to get that WOW moment,, to bad we wont be able to say we told you so

my GP,, decent enough guy,, but I got the vitamin line too,, and when my hands locked over,, he said I was dehydrated, its amazing and so dissapointing at the same time,, how many of us just go off and cry when it becomes to much,, we shouldnt have tolive like this,,

SO tired of all the ologist,, i;m just trying to keep it together for xmas, I am not going to do much,, I am going to try and keep my stress levels down,,

[gphx]

Navydad, there truly is a profound wisdom in taking it one day at a time.

[inga]

gphx, did they disregard your lip biopsy, assuming that was positive?

[gphx]

inga, lip biopsy showed lymphocytic infiltration and chronic focal sialadenitis, as I understand it the two hallmarks of SS. Biopsy was pronounced negative for SS anyway. I'm presuming I failed a focal Greenspan score but they didn't provide it. I sent it back to be redone with a Greenspan score and they still didn't give one, just charged me twice for the same thing. lol

Because it said 'negative' the rheumy apparently discarded it completely offering no other explanation.

That's probably the most frustrating thing. Ok doc, let's assume you're right and all these things aren't SS. What are they then? You don't know? Well maybe they're SS! They just keep telling me my ideas are statisically unlikely but don't tell me anything that is more likely. Doc I know I'm a guy that doesn't mean SS is impossible ok? I know SS doesn't involve CNS complications very often. That doesn't mean it doesn't. Sheesh.

Maybe they just want all the easy jobs and to send anyone who actually takes some work elsewhere. I don't know but it's easy to get that impression.

[inga]

Did I read somewhere else you had a high ACE level?

[dbaratta]

Also sero negative but had lip biopsy and it confirmed it.  Doctors are a dime a dozen (so my GP says) and if I'm not happy, I just change them.  I've gotten to some of the best doctors but I also got answers.  Be persistent.  You are always your own best advocate!  You'll find there are more sjogren's-deficient doctors than we have symptoms.  Keep trying.  Eventually you'll get to someone who actually has the knowledge to help and one who cares.  Doctors these days are so overbooked, the runaround keeps happening.  Sorry I'm so negative but I went around and around for about 7 years before I actually ran into someone who knew what they were doing and how to prove it even when the blood tests said "no". There are some other ways and I wish you luck -- keep pushing!  Happy holiday.