Annual neurology visit was a big disappointment.

[Scottietottie]

Hi
I had an appointment with my neurologist today scheduled for 2.20p.m. I got seen at 3.30p.m. The guy had obviously had a bad day and wanted me out of there as soon as possible. (There were still people in the waiting room)

I only see him once a year. He had a cursory read of my notes and said "Oh - I see you had a lip biopsy and it was negative. Isn't that great news! You don't have Sjogren's". I replied "Well it's not that great - I still have all the symptoms. Now I just have no explanation and the rheumatologist is still treating it as though it is."

I go to him because of peripheral neuropathy and balance issues. Usually he checks my balance. It has deteriorated since last year but today there was no check. As I 'don't have SjS' I can not have neurological issues assosciated with it. *sigh*

He did send me for a blood test however. I didn't know what it was for but I googled it when I got home. He's checking for coeliac. I didn't know it could cause peripheral neuropathy. I bet that test is negative too though. Actually - I HOPE that test is negative too!

Thanks for listening. Take care - Scottie 

[Jorja]

I am so sorry, Scottie.  I've been treated like I was 'faking or exaggerating' and it is NOT fun.  Today I got the call that said I definitely had Sjogrens.  After 8 years of going from being told that I had SJS to another doc saying I didn't have SJS, I was actually happy to hear that the lip biopsy was positive.  It's a crying shame that we are treated with so little compassion that when we have a positive test result . . . we are happy.  I absolutely hate being sick but I hated being doubted even more.  I was always an active, caring person who went from  having endless energy to feeling like a SLUG who was always in pain.  If anyone thinks I want this then they are greatly mistaken.  What I really want is to be the person I was 8 years ago and have that 8 years of my life back but that's impossible.  So while I'm not happy I have SJS - I'm happy that the darn doctors are finally  convinced I do so they can treat me accordingly.  Please don't get discouraged.  We know our bodies and by gosh we know when they are not working properly.  I will be praying for you.

[soycoffee]

Scottie, I did some Googleing. This quote might explain why your doctor tested you for celiac disease --  but he (she?) should have EXPLAINED!

"A recent study found that some people with celiac disease had neuropathic symptoms before the gastrointestinal symptoms of celiac disease appeared."

The study was done by the University of Chicago Center for Peripheral Neuropathy. See their rundown on Celiac disease, the fourth or fifth paragraph, for the quote above, and some interesting facts.
, i
Of course I hope that your test is negative, especially since *we* think (know?) it's dear old Sjögren's, the gift that keeps on giving. The neurologist is searching for a positive test result to explain/justify any treatment, in this era of "evidence-based medicine." When you call to get the test results, might you ask "what is the down side of treating the symptoms, since I could wait years for a positive test, at this rate?" (assuming the test negative for Celiac /Coeliac and associated PN). Back in 2001 -- just before 9/11 -- my neurologist diagnosed me with PN. He did not wait to give me Neurontin, but started me slowly on it, with physician samples from the drug companies, and kept me supplied with Neurontin.

Scottie, it's possible that, since you had ataxia (balance, uncoordination problems) a year ago, he has treatment in mind that would work if you turn out positive for Celiac/Coeliac disease. He would want you back to start the treatment, or try the next guess. It may be a case of "first do no harm," where the proper treatment for Coeliac/Celiac disease would not be right for generic neuropathy. And where the treatment for generic neuropathy (as in Sjögren's, AFAIK) would not be right for Coeliac, or would not work as well.

When your rheumy has the dx on history, and the neuro wants a confirming test because of the normal lip biopsy, perhaps your GP / Internal Med  doc could cast a deciding vote, in consultation with you!

Oh, I want passionately for you to get effective treatment for everything!

Chorus of "So say we all!"
Soycoffee

[arina83]

Sorry you had this experience.

Just found this study, about Sjogrens with negative lip biopsy. http://www.ncbi.nlm.nih.gov/m/pubmed/1930321/

[quietdynamics]

In addition to what Soycoffee wrote: your Dr. is going to search for a diagnosis AND the insurance will insist on one to pay for treatment.
Perhaps your Dr. was genuinely happy it is not Sjogren. 

[susanep]

So sorry about your experience. I remember having an appointment with a doctor once, and it was at the end of the day, and that is what he did as far as rushing me out the door.

You still know how you feel, and what your health issues are.

It really is frustrating though, and especially when you see him once per year.

susanep

[Patze]

I'm sorry to hear that Scottie and I sure do feel for you!  Yeah, I've been fighting that battle since the beginning of this mess and the "attitude" about being sero negative just continues to amaze me.   My goodness, I wonder if they think that you're trying to "get over" or something?  What we'd be "getting over" I have no clue, but its frustrating and very demeaning (let's not even mention things that get missed because the medical person is ignoring the forest because this one tree is bothering him).

Can you get a referral for a second opinion maybe?  Or could your primary call the neuro for a re-eval?

Hang in there my friend and I hope that you get seen by a neuro soon.

Take care of yourself and please keep us updated, okay?

Patze

[Babs659]

Poor Scottie.  Sometimes I really hate these doctors.

[Carolina]

Among my guidelines  for appointments with the doctor:  Take the earliest possible appointment.

Research has found that professionals become more and more negative and punitive as the day goes on!

This was a comparison of sentences meted out by judges, comparing sentencing early in the day with sentencing given in the late afternoon.   As the day went on they handed out harsher and harsher sentences.

But then right after lunch is pretty good!

http://blogs.discovermagazine.com/notrocketscience/2011/04/11/justice-is-served-but-more-so-after-lunch-how-food-breaks-sway-the-decisions-of-judges/

On the issue of diagnoses, it IS clear that doctors prefer clearcut answers.   Then they can refer to their file of stock answers and don't have to try to keep a lot of apparently unrelated symptoms in mind.

Scottie, did you take someone with you?   Having a second person present sometimes perks up the doctor.

Hang in there.

You deserve the best.

Hugs

Elaine

[Scottietottie]

Thanks everyone 

You always make me feel better.

It's just weird to have actually been given a dx in 2004 (after about 15 years of trying to get one) and then to have it taken away again. At least they don't seem to be going back to the 'hypochondria' label and I'm still on Plaquenil which I really don't want to come off!

Interesting links - thanks!

Thankfully, as I live in the UK, I don't have to worry about whether the insurance will pay or not.

Take care - Scottie 

[Dolly Dimples]

 Know what ?    before long they will be saying there's no such thing as Sjogrens!!
                       This site has kept me sane enough to keep going.. Bless all, Dolly x
     
                 

[genko_b]

Perhaps someday medical schools will require students to become ill themselves and go through treatment in order to qualify for a medical degree. Also, they should learn that when we come in for an annual check it has considerable importance to us, not like for them who just want to check us off their list.

So sorry Scottie that you got treated this way.

Take care,

Genko

[lolo1979]

How long have you been on the plaquenil?  Perhaps that couldve improved things to the point that your biopsy showed negative.  That would be fantastic!!! But not so good for receiving proper diagnosis. 

As for celiacs, that's great that he is testing you. If it does turn out positive, don't worry! There are lots of great substitutes now that make living gluten free a lot easier.

[KellyG999]

Scottie,

Sorry I am late to this one. How frustrating!! I am also seronegative, but was diagnosed very early on once I had gone through several GP, allergist, and ENTs and found a rheumatologist. Based on my severe dry mouth, throat, eyes and allover constant pain, he said it is SJS and probably lupus or RA. since then, I have shared the SJS diagnosis with my GP/PA team and eye doc and dentist. They all placed it in my charts and I simply won't allow anyone to "undo" my diagnosis and put me at square one. No way! Plus, my PA said there are numerous seronegative patients in their practice, so they have no problem treating me. They have seen me suffer well over a year, not be able to eat, lose 25 lbs, etc. I sure wouldn't TRY to have this if there was any choice in the matter.

Maybe he is trying to help you, I can't judge. But if YOU are not happy with the care you are getting, fire him and move on. Life is too short and suffering is too hard, to deal with any doc who doesn't get it and provide compassionate care...

Good luck!!
KellyG

[Scottietottie]

Hi 

I've been on Plaquenil since 2004 and my previous rheumy said that it had made a difference to the blood results - which proved it was working.
I went from being positive for lupus back to being negative and he was sure it was the Plaq.

I actually like my neurologist. He is trying to find an answer. He just wants clinical back up for things though. As long as the treatment keeps going and i'm not told I'm imagining things I can live with the lack of label. (Maybe it will even be cheaper for air travel insurance!)

Take care - Scottie