Just what Doctors can diagnose Sjogren's

[mews]

  Hi everyone, I am new to these forums. I have been doing a lot of reading, there is a lot of great info here.. My eye Dr. said she's pretty sure I have Sjogren's, she did the rose bengal fluorescein test two different times, and I have have severely dry eyes. I'm now on Restasis and Lotemax, I think I'm going blind in my right eye. I have Peripheral Neuropathy, brain fog, blue feet, dry mouth, and a ton of other things. I have seen so many Doctors in the past year it's crazy!! Each Doctor would say that's not my field, I do this not that, and so on... It's like no one Dr. will put every thing together. This really all started about 4 years ago, the rhume I was seeing then said all my blood work was normal and I didn't have half the symptoms I have now, then about a year ago I crashed and the symptoms  just keep rolling in.
  So now I am going to see a new rhume, in New York City, I can only pray she knows what to do!!!! I am also having a biopsy done on the inside of my mouth while I am there! So my question is, can any Doctor tell me I have Sjogren's or does it have to be a rhume??? And does any one know of any Dr's who treat  SjS up north by New York?
  Thank You all for listening!! Look forward to meeting you all...

[Scottietottie]

Hi Mews 

Welcome to Sjogren's world. The first doctor who suspected I had Sjogren's - and ran blood tests - was an endocrinologist. When the blood test showed up as mildly positive for lupus, she referred me to a rheumatologist who dxd me with Sjogren's going by symptoms.

There are several people who use these boards who have been dxd with Sjogren's but who do not have positive bloodwork.

I hope you find the site useful. I'm sure you'll find it friendly and supportive.

Take care - Scottie 

[Bopeep]

Hi Mews welcome to sjogrens world. Youll find everyone here wonderful, supportive and informative. They will end up becoming your extended family.

to answer your question as best I can from someone outside America. A Rhumitologist should be able to diagnose you. When I was undergoing tests it was the lip biopsy that finally decided I had sjogrens. HOWEVER there is a lot of controversy about getting the lip biopsy done. If I had known it would leave my bottom lip numb I wouldnt of had it done as a lot of other people here have decided not to get it done because of the numbness. I also had tyhe eye tests done and failed that misserably as well.
Hopefully you will find a decent Dr in New York city. It sadly appears that you guys are short of real good Drs and or a Dr that gives a darn.
No matter what stay positive, its just a re adjustment to your life and it can be made so you can still live a realitivly normal life and when you just get to tired you at least know why your tired.
take care and good luck

[Pisces24]

the doctor who finally positively diagnosed me with Sjogrens was an immunologist.

[mews]

    I will be having a lip biopsy on Wednesday also, I hope I get some answers finally. NYC has some unbelievable Doctors, you just have to find them LOL

[warmwaters]

My GP made the initial call, based on bloodwork and symptoms, and sent me to a rheumatologist, who agreed. However, there was a lot of elimination in the story too, visiting other specialists to rule out other problems.

And since then, I've visited with lots of nifty specialties, including neurologists, sleep specialists, neuropsychiatrists, gastroenterologists, and so on. Good times.

[Patze]

Hi Mews,

Let me also welcome you to the SJS World and family! 

I'm so glad that you've found our board information and welcoming! 

The rheumy also diagnosed me as having SICCA for for first several years, and as the symptoms progressed (along with other diagnoses), he has listed me as having SJS.  Now, personally the label hasn't really changed anything as the rheumy was already treating my symptoms and I figure that that's half of the battle.

Is your primary willing to work with you about your symptoms? 

Good luck at the rheumy's and I'll keep the old fingers crossed that the biopsy gives you an answer that you're looking for. 

I'm sorry but I don't know of any rheumy's in the NYC area, and maybe one of the members might have a name for you.

Again, welcome, and I hope that you'll keep us updated, okay?

Take care of yourself -

Patze

[LeoLady]

Hello and welcome Mews:

Sounds like you're ahead of the national average it take SjS patients to get a diagnosis...6 to 7 years!  Rhuemy's are supposed to be the doctor of choice for Sjoggies, but unfortunately, many of them just don't know their stuff.  Some of us use endo's, gastros, neuros, GP's, etc. - whoever can help us the most with our particular set of symptoms, and that varies wildly from person to person.

Hope you get some answers soon.

Hugs,

LeoLady

[Sissy]

Welcome and I hope you can find time and energy to read the postings. There is alot of good information here, and the personal experiences will help you to see your not alone! My MCTD was diagnosed by a Rhuemy. The Sjogren's by an ENT. The degenerative disc disease by a Neurologist. I do have a few ologists under my belt. Now I'm scheduled for a CT of the head/brain and neck tomorrow. I will see the eye doctor in two weeks. In my case the specialists gave the diagnosis and my primary care doctor took over the treatment. In my case I feel I do have continuity of care. I hope your able to find the physicians you need and that you get the proper care all of us deserve. Sissy

[inga]

I can't read really long posts.  Sorry, I must have brain damage, or a short attention span, but it all goes over my head.

A doc who diagnoses Sjogrens?  I guess only those who are open to it.  Keep in mind it is a syndrome, or collection of symptoms, not a 'disease', yet.  Try a neuro, or an enlightened rheumie.

[mews]

  I am really loving all the help I am getting from you all. First let me start by saying my Primary Dr is a jerk. When I first went to him he told me" There's nothing wrong with you HONEY go home and make your husband DINNER". Well you all don't know me but thats not what I did, instead I yelled at him. He can't figure out any thing for himself, but if I hand him the info he might become useful in some manner, we will see.. So far I have seen a 2 Neurosurgeon, a  2 Neurologist, Gastro, Optomoligist, Uroloigist and this is my third Rhuemy in 4 years.... Well you guys know the drill !!!  I just keep looking for the one who will put it all together and work with me.

  The teaching hospital is really a great idea I am going to really look into that... Thank you all for your wonderful advice, and I will let you know what happens tomorrow, or Thursday!!! Feel good All...

[irish]

Rheumies should be able to diagnose Sjogrens but they seems to be stuck in the Positive blood work rut. Neuros can diagnose if they are up on their autoimmune diseases, which they should be. REmember that MS is often mistaken for Sjogrens or vice versa. A family doctor can diagnose by watching all the symptoms. Any doctor who has a brain and uses it is capable of diagnosing. The big thing is it takes time and many docs don't want to spent all that time as their isn't as much money in a patient who takes a lot of time. This is the cruel fact of life.

The big thing is to get someone to treat your symptoms especially if you are having Reflux or pain, etc. The latest early treatment for Sjogrens is Plaquenil and it is being given earlier in order to prevent rapid advancement of the condition. I would ask your rheumie about using this drug along with prednisone. The prednisone helps until the plaquenil kicks in which can be 4 months or so.

Also, if a person has a lot of neurological symptoms that are getting worse it is getting so the docs will start out with Imuran, cellcept, or one of the big gun medications that will halt the autoimmune disease.  Many people will tell you all sorts of horror stories about these medications, but one has to make choices in life and many times people do quit well. It is better to get the disease under control early than to wait until you are really sick and then do the big gun meds. Good luck and let us know how you are getting along. Iri ;Dsh