ok, after an extended visit with the new rhemy, SHE, not he said..."yep! you have sjogrens." I said um, excuse me but my blood tests were ALL negative. how can that be? She told me all about the sjogrens markers. I have 3 out of 6 without blood tests. She is now calling my MS center to discuss a lip biopsy for me to figure out if the sjogrens is primary or secondary. (that would make 4 out of 6)

IF its primary, that means my MS dx comes into question. IF its secondary, that means I have it ontop of MS. She told me that its rare that she gets someone that walks through the door that she she says WOW, now that girl has sjogrens. drat drat drat and double drat!

Still no word on my MRI. I was given a prelim preview. I had 2 new enhanced lesions at least, and 2 non enhanced lesions. That would possibly mean the copaxone isnt working. if that is the case the solution is METHOTRAXATE! I dont want that! She told me I would have to go inhouse for a monitored course, and she would release me on pills after 3 to 5 days depending on my reaction. She said IF its sjogrens and not MS the copaxone/betaseron wont help me and the IVSM is the wrong steroid to treat it.

Has anyone else had the methotrexate? please tell me YOUR experience with it.

Drat drat drat drat drat drat drat drat. I am in another holding pattern while the MDs battle it out.

Drat is right!

Just when you think you know what's going on..
I've never taken Methotrexate..Refresh my memory ~ is that the one that they have a lifetime limit on?
I'm sorry this is getting more complicated than it has a right to be..Thanks for the update. You'll be in my thoughts!

Hmmm... sounds confusing, you poor thing.

First of all, what ARE the 6 markers for Sjogrens?

I had that DX then the next Rhuemy took it away because the labs didnt show it. The first Rheumy was so sure but she moved.

I was put on Plaquenil and Methotrexate after a 3 week oral prednisone. I did not like Methotrexate, made me sick. ITs a cancer drug used for auto immune disorders like Rheumatoid arthritis etc. BUT it helped my spasticiy go away!! Go figure!!

I took something for dry mouth, which I loved as it instantly worked giving me spit and making it easier to talk/teach.

There is a GREAT Sjogren's forum I was on and they were very welcoming. The moderators make sure your posts are answered. Not as big as Ms World or this forum but very very friendly and caring.
THey are experts on auto immune diseases esp sjogrens.

Hope you get relief. Keep me informed

Jan

ok methotrexate is a heavy duty drug. It can be IV or IM and or pills. This MD was sure I have it even with negative blood tests. She said you CANT say you dont have it until a LIP BIOSPY is done. They take a tiny piece of the inside of your lip, and take a peice of the salivary gland. Even with negative blood tests, it show specific markers of inflammation only seen in sjogrens. A dentist or ENT can perform this operation.

Let me see if I can remember the markers.

SEVERE dry eyes. Severe Dry mouth. Joint pain Blood tests for ANA/ssa/ssb/ige..alla that. severe dry skin (dry enough to cause a thickening), biospy of lip gland, and some salvary test where they measure the actual amount of saliva you make. she said the last one is painful. I promise to look up my notes and come back to correct myself.

She told me it can mimic MS, and can even cause lesions in the brain. Since its an auto immune disease, like MS it can mimic other things. She said its a sister to lupus.

I have severe dry eyes. not bad dry mouth, but its dry. Extremely dry stools. My skin is THICK! and quite dry. doing daily copaxone shots has not been fun. My eyes are so dry that I have dry scarred patches on my cornea and optic nerve. I have sensitive skin, and joint pain in my ankle and hips.

I was just getting used to the idea of MS, and now we are playing the "is this really MS game" I just got through asking my MD if we are really sure this is MS. I dont wanna keep shooting myself everyday on someone's guess. So, I dunno, is this lady crazy? Am I crazy? I surely dont want to go to the hospital for IV methotrexate for 3 to 5 days, and then switch to the pills.

I am so confused, and frustrated. Have I spent two years jabbing myself with meds that may not have been for the disease I actually have. My last MD visit they were quite reassuring that I have MS, and now she is quite reasuring that I have sjogrens.

Crap crap double crap. I told her to make all of those calls herself, to leave me out, and be prepared to convince me once they figure it out. I dont want to know about the fight, I just want to know the outcome. I want hard core proof, not guesses. Lets see what they come up with.

what was the name or url of that message board???

Hey Deji! Well, that totally stinks!! So sorry you are getting tossed around regarding a DX. A good friend of mine has Sjogren's and her sx's do sound alot like yours. Gosh, I just feel really bad that you are going through all this guesswork again.

On a side note~ I had eye plugs put in twice (smaller to larger ones) and they really helped my dry eyes. It was a piece of cake to have them put in.

Keep us posted on what's going on and hang in there. We are here for ya.

dejibo, i sent you a pm with the link to forum that silverlady, a PN member here, is a mod of.

The Sjogren's forum is:
sjogrensworld.org/forums/
They are very helpful. They have some who have other auto immune diseases plus Sjogren's, including MS.

Did you do a search either on this forum or MSWorld forum for MS AND Sjogrens??

Methotrexate is tolerable.I took a pill only 1 time a week but it seemed to make me sickish/weak/tired for the whole weekend. I never seem to get used to it tho perhaps cuz I didnt really have Sjogren's or didnt really need it??? I just remember its the ONLY time my spasticity in my legs was gone!!!

The female Rheumy told me I just had too much going on that she was ruling it in as a differential..but when she left the next Rheumy didnt know how she could do that without the lip biopsy.

I am changing insurances and one day will see another neuro or rheumy to get their opinion. The 2nd Rhuemy did think I might have a dysfuntional autonomic problem. The MS neuro who had ruled out everythign else treated me as if I had MS, a mild/benign case (mild??) and then he said after 4 years, no I dont.

Now I just dont care. I just want palliative care for now. I never had to take shots.

What ARE your MS symptoms??

All I know is that now I hardly ever take that pill for dry mouth nor for my eyes, as Restasis has truly helped. OH I still get dry eyes, esp at night but its not as bad as it was. My lids nearly stuck together.

You poor thing, no wonder you are so confused. Get on that Sjogren's forum... they are very helpful.

Jan

Dejibo, glad you are getting help and ideas from here. Sorry you do not have the results yet to decide about Copaxone and if it is working or not.
It sounds like you have 4 new lesions. Is that correct?

It is amazing how many other things can mimic MS. I am just beginning to appreciate this myself.

I am glad you have a doctor who is willing to fight the good fight. Hang in there.

I have at least 4 new lesions. She didnt go on a old count vs new count with me, just wanted to point out that I had at least 2 enhanced ones.

My MS sx are a dropped left foot. hyper reflexes in my left leg. Positive babinksi reflex on the left. Periventricular lesions, MS hug, and Optic neuritis.

My sjogrens is THICK/dry skin. Painfully dry eyes, like my eye lids want to stick to my eye ball even with the plugs. very dry stools, not bad but dry mouth. rash prone sensitive skin that is taut and firm.

lets not forget my glioma! Now, I want to know, is this a true glioma? or is it a patch of inflammation? things that make ya go hmm.

I have found a couple of spots with message boards for sjogrens. I DO have it. the question is primary or secondary. If its primary, then my MS dx falls into question. If its secondary, tis because of the MS, and I get to keep both, lucky me.

This is just such a stressful, confusing time for me. I just want things to work the way they are supposed to work, and have an MD give a dx that sticks and fits.

If Sjogren's is causing lesions like MS, then it is possible that what appears to be MS symptoms could indeed be related to Sjogren's? Do they fit in the Sjogren's list of symptoms?

Hope you hear from your doctors soon. Life can be too interesting at times.