Anyone diagnosed with Sjogrens but it turned out to be MS?

[tmarie0183]

So I just got back from the neurologist today, and she doesn't like the new white spots on my MRI.  She said she isn't too familiar with neurological aspect of Sjogrens (but from what I hear it can mimic quite closely) and she isn't convinced that I don't have MS.  She wants me to have a spinal tap and she said if " O bands" are present then she is changing my diagnosis to MS.  I am completely devastated and can't stop crying   I know Sjogrens sucks a$$ but I would take it over MS anyday.  I am a neurological nurse and I have seen the worst of the worse when it comes to MS and quite frankly scares me to death.  I was just wondering if anyone was first diagnosed with Sjogrens but then was found to have MS or vice versa??

Thanks
Toni

[Carolina]

Dear Toni,

I don't know what to say.

My neuro thought it was MS and did the spinal.

It wasn't.

But what you are going through is terrible.  My heart goes out to you.

And having TMI (too much information) of the worst sort isn't helping you now.

I can't say anything you don't know.

Kisses

Carolina

Needless to say keep us POSTED!

[tmarie0183]

Thank you Carolina

[Reanne]

Toni,

Hang in there.  Try NOT to look everything up online.  When will you have the spinal tap?  I don't have MS, so I can't really answer your question.  I know sometimes it takes awhile to get the right diagnosis.  I think mine changes as my bloodwork and symptoms change.  Keep us posted.

[Scottietottie]

Hi Toni 

The women who founded this site were both dxd with MS and several years later had their dx changed to Sjogren's.  In your line of work I'm sure you've seen the worst of the worst but you must also know that MS is also unpredictable. I know at least 3 people who have lived with it for many years and who will probably die of something else.

Take care - Scottie 

[lori]

hi Toni

praying for you!!!!

keep us posted

lori

[Kaylin]

I very recently went through this.  My rheumatologist insisted that I have too many neuro symptoms and he thought MS was a better fit and wanted me to go back to the neurologist.  So, I went to my pcp and managed a few tears while I told him I don't want MS.  He's so awesome at putting things in perspective for me.  He told me that he's treated many people with MS and they vary in symptoms the same way people with any other autoimmune disease do.  The diagnosis of MS isn't a death sentence, it just gives the dr.'s a better picture of what's going on and how to treat it.

I know it's scary, but try not to put the cart before the horse.  Whatever labels they slap on your condition, you'll get through it, same as always.  I don't think we have much choice...hehe.  Try to relax, stress just makes everything so much worse.

[inga]

I feel like what I have is more like MS.  That is how I describe what I feel like to my doc.  I haven't been retested for it in 6 years.

I hope you find answers.

[lmac1013]

Hi, I'm new here.  I have ANA positive blood, and SSA (high).  I have RA as well.  I'm on Salagen and Plaquenil.  I finally have some sort of a diagnosis after having some neurological issues back in November.. I had white spots on my brain as well. I had numbness in my face and hands and feet.  The dr thought it was MS, and I had a spinal tap, and all tests came out clear.  As scared as I was to have the spinal, I'm glad I did.  Try to think positive.  I know that is hard.  I had no idea Sjogren's can mimic MS neurologically speaking.  I am still trying to make sense of all that it happens.  Please know you're not alone!

[Scottietottie]

Hi lmac 

Welcome to Sjogren's world.

I hope you find the forum useful. It's certainly friendly and supportive.

Take care - Scottie 

[tmarie0183]

Thank you for all of your kind words.  I have my spinal tap next week and I will keep you posted 

Thanks
Toni

[sleeeepy]

I have wondered this in the past about myself...thinking maybe I had MS because my Mother's sister has it. I am still going to try to get an MRI of the brain to see if any lesions show up and whatever else they look for for MS.  I just wondered about this because on my research I don't see very much being mentioned about dry eyes, mouth and vaginal dryness being associated with MS unless one has Sjogrens on top of MS...all so confusing.  Any thoughts or info on this anybody?  Thanks Mary