Postive test, then negative

[southerngirl]

Hi,
Looking for a bit more info on Sjogren's. 4 years ago I was very sick, achy stiff legs and joints alot of fatigue and this lasted about 4 months. Went to Rheumy who told me raised titer for lupus, but didn't diagnosis me with Lupus. Said I had Sjogren's and to come back if symptoms got worse. Everything was fine except for dry eyes up until last November. Bad headaches and sore eyes led me to PCP who sent me to Neuro. The 1st Neuro thought MS, went to MS Specialist he said all migraine lesions, no MS. Both dr's said my neuro exam/evaluation was normal. I had another blood test for Sjogren's and this time it was negative. I had 8 obands, and inflammation either was found thru blood test or spinal tap, not sure.  MS specialist said it had to be a virus. He said if I did have Sjogren's then that went hand in hand with Lupus or MS usually..

I have had stiffness in the morning, extreme joint pain, sore legs and feet almost everyday. The fatigue is not so bad at this time.

I read some of the posts here and found that Sjogren's can have neurological aspects to it, which is a relief as I was very worried about MS. Does anyone know if obands will show up with Sjogren's?  and why would one test be positive 4 years ago and now negative even though I am having symptoms?

I plan on going back to Rheumy when I can afford it.

Any insight appreciated.

[irish]

Hi southerngirl, Once positive blood work and diagnosed---always have the disease. The blood work can be positive but without symptoms which to me seems like being in a line at the grocery store. Got the stuff in the cart and just depends on how things go whether I get out of there in the next hour or so.

Actually, some people without positive blood work are very ill with autoimmune issues. My immunologist seldom does blood work. Once it is positive he says we know what you have and treat the symptoms, etc. The blood work of any of the autoimmune diseases can bounce back and forth from neg to positive. I think the docs get more hung up on this than we do.

We know that when we ache, suffer from fatigue and have all the symptoms that we are suffering from the sjogrens whether the doc agrees with us or not. If you have trouble getting treatment for your symptoms you need to shop around for different docs. Also, it is felt that the earlier sjogrens is treated with Plaquenil the better off we are. This med reduces the inflammation caused by the sjogrens which decreases a lot of our symptoms.

If you are having neuro symptoms it is very important to be referred to a neurologist who deals with autoimmune issues. Good luck. Irish

[Patze]

Hi Southerngirl,

Let me also welcome you to the SJS World!  This is a great place to find a ton of information and a lot of great members too!

Irish has given you a lot of information and there's not much I can add.  She's right, don't let the new negative bother you much, I've never been positive for anything including Hashimoto's, but I was diagnosed for it by a biopsy - go figure.

About obands I can't speak of, and hopefully a more knowledgeable member will stop by and pass on some info about them.

Hang in there, and I hope to chat with you soon.

Take care -

Patze

[Scottietottie]

Hi Southerngirl 

Welcome to Sjogren's world.

I'd never heard of obands before so I googled for them. Initially MS seemed to come up a lot until I googled for "oligoclonal banding + sjogren's syndrome" Several links came up although I must admit, I've only read one of them. I'll post the link but if you type what I typed into a search engine - you could find out more.

http://www.annals.org/cgi/content/abstract/104/3/323

Take care - Scottie 

[Linda196]

Hello and welcome Southerngirl.

It's only within the last few decades that there's been any support for the possibility that o-bands mean anything but MS...that used to be the defining diagnostic finding, and now that's changing. Unfortunately, not all doctors are getting the word, much like many still believe you can't have SjS without positive blood work, many still believe that if you show o-bands, you have MS.

I hope you find lots of helpful information here.

[southerngirl]

Thank you all for responding to my post. I have read so much about obands, some say more 2-5 means MS and anything more means virus or something else. I don't think alot is known really on any of the autoimmune issues.

I will keep reading the forum to get more insight into Sjogren's. Thank you again!