Back from rheumy

[WildThing]

OK so just had and come back from my second appointment with the new rhuematologist.  He said all my blood tests results came back normal.  Also he said the bits of paper in the eyes test (forgot the official name sorry) came back normal.  I don't know why but for some reason I didn't sit there and try to convince that my eyes are, in  fact, very dry.  I have had a opthamolgist tell me this, or rather confirm it, anyway.  He did say that due to the MRI on my salivary glands they could see my salivary glands weren't working properly which, he said is normally an indication of SS.  He is going to send me to have a lip biopsy done so I am just waiting on a appointment for that now.  He said if it comes back normal he won't see me again.  Not entirely convinced that's a wise thing to do given that I am in fact so symptomatic and have had alot of ankle swelling (which again wasn't too obvious at the time of the appointment) so just wondered what you guys think of it all?  Thanks again.

[Scottietottie]

Hi

Is your opthamologist in touch with your rheumatologist and did the opthamologist do a Scirmer's test? If so what were the results. (The paper in the eye test)

You have a right to your test results but your specialists should also be in contact with each other and with your GP.

Take care - Scottie

[WildThing]

Hi scottie

my GP knows about the dry eyes and the results from the opy but the rheumy doesn't seem to be aware of it.  It was the rheumy who did the Scirmer's test.

[jazzlover]

I wouldn't do a lip biopsy myself. NOPE.

[quietdynamics]

Oh WildThing..... what a bummer!!!!

You leave for the shore soon....yes?

Go there and breathe....take some lite music and enjoy yourself.

When you come home. Get organized....less stressful.
Contact all your Dr. and request copies of blood work/test results....if they charge for them then instead sign a release for copies all copies to your GP.  Then, make a call to your GP and ask how to get your personal copy so you will have them for the specialists you see.

Each time I have something done I get my own copy and take them with me to the next Dr. So they are not doing the same test and / or have info they might not have thought about.

I would think that something like a Scirmer's test might vary?

In the meantime I would consult the GP and Ophthalmologist. (Ask the Ophthalmologist to fax his results and Dx to the Rheum... can't hurt)

My best to you.

[WildThing]

Hey Quiet, I leave for the shore in 4 weeks, had just about as uch as I can take for now.  I don't think I am going to get an official diagnosis at this rate no matter how hard I try.  Was sitting in the waiting room yesterday moring daydreaming as one does and suddeny imagined what life would be like if in an ideal world some dotor who could take care of all my problems saw me and said 'right, first let's sort the Sjogrens Diagnosis out....' then I imagined myself getting so emotional I welled up.  But of course that's just  fantasy as the reality was quite different.  He blamed everything from medication side effects  to stress but the thing is my symptosm started before I was on any meds at all and the reason I'm stresed is because I've been through so much health wise.  I really don't think I'm getting anywhere here guys and I've had a gutsful.  I mean I know there are dozens of people on her who have negative blood test result yet got a SS diagnosis.  I don't get why I have to be so different and get pushed out in the cold.  Maybe its coz I'm in the UK I don't know myabe as most of you are from the US or Canada you'd find the docs are a little different I don't know but here, no one is helping me.

[irish]

You know what, in view of all you have been through lately it sounds like a good idea to take time off and just lay around and zone out.

I think if it was me, I would skip the lip biopsy. If the doc wonders why tell him that you have heard about too many people having bad results and lots of pain. Really play it up. It is better, I think, right now to avoid the lip biopsy and the chance that it would be negative. This would give some doctors the opportunity to maybe throw you under the bus.

Sometimes the longer you wait the better the chance of the tests converting to positive. I would just find a different rheumy who doesn't need to have positive blood work, etc in order to do something positive. Rest up and then in the fall maybe get back on track and start in again.

It is very disheartening going to the doctor and being shot down all the time. Been there, done that!!! The funny thing with me is that I never had any postive anything for years and didn't have sore or swollen salivary glands. In fact I am just now starting to have some more constant swelling and it isn't even that bad. It does hurt at times though and I have had a lot of infection and salivary stones. I was insulted by a few of the upper crust doctors who thought I was crazy.

LIttle did they know!!! It gets very frustrating trying to get ones health taken care of. Rest assured that you will find someone who will believe you and it will happen when you least expect it. Enjoy the time at the shore ( I am very jealous) and relax. Have a good summer. Irish

[Belsey1]

What seems crazy to me is for the rheumy to order an MRI of the salivary glands if he wasn't going to use the results as a diagnostic tool.  It seems if the MRI indicates SJS he should go ahead and treat you for that.  If he wasn't going to treat you without a positive lip biopsy he shouldn't have done the MRI. 

Will your Ophthalmologist or PC treat you for SJS?  I know there has to be someone out there who will treat your symptoms.  I just hope you find them soon.  In the meantime, enjoy your trip to the beach.

[WildThing]

Hi Guys

Thanks again for the responses.

I think you're right Irish I think I should postpone the lip biposy, play them a but.  Sounds manipulative but as you say if it turns out ok that's their get out of goal free card.  Plus I do need a break from thinking of it all.  This is actually the second rhuematologist I have seen about the SS.  The first one I saw a year or so ago and he ordered the MRI which is why, like you Belsey, I thought it very odd that he ordered the test at all if he knew beforehand that even a positive result would ge me kicked out of the door.  When it came back positive he said I didn't have SS due to my bloods being normal and literally pushed me out of the door so I had no choice but to leave.  He wouldn't even examine my swollen ankles.  I thrn asked for a second opinion and that is why I am in this position now.  I can't see me seeing a third rhuematologuist tbh not on the NHS.  I think my only option as I can see it anyway, is to go privately.  I don't see my opthamologist anymore as he said although my eyes were dry that there was nothing wrong with them so discharged me.  My GP supplies eyes drops and artificial saliva, that's about it.

[bob212]

Hi Wild Thing,

I am assuming that when you said blood work normal you had a negative SSA/SSB and ANA, i.e. seronegative?  If so they can only go by the symptoms and if you have dry eyes/mouth they can treat those symptoms.  I agree with the reply that says no to a lip biopsy.  After all, if the MRI showed a decrease salivary function, you should be given a prescribed treatment whether its caused by SJS or what they call a "non-differentiated autoimmune disease" a category I was in for a while.  Most important is insist on whatever will increase your comfort level.    Good luck.

[Patze]

Hi WildThing,

Ugh, that must have been so miserable!  Now I can't tell you to bypass the biopsy or not, but like Belsey mentioned, could you ask your primary to treat you (I've gone through four endocrinologists and still haven't found one I trust yet, so until I do, my primary deals with my thyroid issues)?

Hang in there, and have a good time at the beach, okay?


Patze

[WildThing]

Hey Bob, don't know what my results were the rhemy just said they were 'normal'

[quietdynamics]

There is criteria for SJS. This is current 2012. And does mention in the absence of positive blood work, a lip biopsy is the next test. Link below.

The other issue to consider is that Plaquinel, a scripted med, is not fully understood. I believe you are within childbearing years, and have some other medical history. Here is info http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000171/

So the question is ....wouldn't it be safer to treat the eye symptoms with the Ophthalmologist? And move on...?


* I chose to remove  link on criteria.

[WildThing]

That's a bittoo complicated for a dyslexic!  The link I mean, thanks anyway.  The opthamologist has, like the others, discharged me so i have nowhere to turn to but my optician or my GP now.  I understood a lot of ppl on here though have had negative bloodwork...