Sjorgren's??
 

it has been suggested that I may have Sjorgren's.

My eyes are EXTREMELY dry. my lips are cracked, I have trouble absorbing enough water into my poop, and while my dry mouth isnt severe, it has been documented.

Does anyone else have this ??? Where do I go for answers?

I was using eye gel, and I turned out to be allergic to it. My eyes were all swollen and sore. looked like someone punched me. I am off ALL eye stuff now, except for a steroid cream the MD gave me. I get eye plugs July 1, 08 and I am told they really help.

ok, so I am lost about this disease. Wasnt MS enough? Im miserable!

Dejibo,
 

So sorry you are having something else to deal with besides the MS. It just doesn't seem fair. You are in my thoughts and prayers.:hug:

Yuck, that sounds unfun! :(

With a quick search, I was able to discover a few other members here who have experienced this. You might ask around a bit. I hope you'll figure out how to make it go away.

http://neurotalk.psychcentral.com/se...g_searchinfo=1

Hi Dejibo:

MS is often accompanied by other autoimmune diseases. Sjorgen's is one of them.


http://www.sjogrenscanada.org/

http://www.mayoclinic.com/health/sjo...ndrome/DS00147

Hope those links help.

I am sorry to hear that you are having to deal with this. Hope the eye plugs help and they can find a solution to your problems. I have been dealind with the dry mouth problem, cracked lips, and dried out nose but figured it was a result of taking several meds and allergies.

I have been doing a truck load of research, and I guess its a pretty common syndrome. It can be tested for with ANA tests and IG tests. I know my sed rate is pretty high, and it may explain why I was so quick to go to extremes with my liver function tests. So, it explains alot.

I did order some eye spa stuff. its a set of goggles that you can put hot/cold packs into and it seals out all light, and helps keep moisture in. The eye surgeon told me about them. pricey, but if it works, I dont care.

I am just miserable. I dont have the bad dry mouth, but dang! I would like to be able to open my eyes without feeling like my eyes are gonna turn into dust and blow away.

post on our pn forum.

silverlady and think a few others have sjorgren's.

:hug:

use the search feature. i know their posts will come up.

I am glad you are getting some good suggestions here to help you sort this out.

As Gilda Radner would say, "Its always something!"

I hope the plugs make a huge improvement for the way your eyes feel.

Gel drops have a preservative in them that you really should not use more than six times a day.

The artificial tears (non-gel) usually do not have any preservative in them and can be used as much as you want. (always check to make sure there's no preservative)

I had extremely dry eyes last month (allergies) and was using the gel drops until my eye doctor told me to just use artificial tears. (I use Refresh Tears) He also gave me a Rx drop that's for allergies. That's one drop a day and no more.

The gel drops were making my eyelashes and eyelids all crusty and icky. Now I save the gel drops for just before bed. The gel stays in the eyes longer than the artificial tears.

I get thirsty at night really bad, and try to keep a bottle of water nearby.

What is PN forum?

Also the eye surgeon pulled me off ALL eye stuff except her steroid cream. My eyes are dramatically better. but still extremely dry.

I just hate that I am now turning into a syndrome collector. I want to collect stamps or money, not diseases.

Peripheral Neuropathy

Here is the link to the forum:
http://neurotalk.psychcentral.com/forum20.html

I had ALOT of blood drawn yesterday, and the results all came back NEGATIVE! wooo hoooo! :yahoo:

I dont have sjogren, or lupus, or arthritis markers. I am not showing severe allergy markers, or well...lots of other stuff. SSA, SSB ANA IGE,SED, and so on . ALL normal!

You just gotta love good news. It doesnt make my poor eyes feel any better, but it does make my heart sing.

Thanks for all the well wishes.

That's great, Deji! So happy for your good news!

Thanks for sharing. Hope you get some help for those dry eyes. :hug:

Gosh I am sorry, I thought I responded to this post.

I have had severe dry eyes, getting worse over the years, the dry mouth that I blamed on meds. But when the MS doc's PA thought my new symptom of pain was fibro, I found a rheumatologist. She ran all kinds of tests but when she asked about dry mouth etc she said she thought it too might be Sjogren's. Even joined their forum.

Tests were NEG but since no one thinks I have MS either, she decided to treat me for Sjogren's as a "differential" DX even tho tests were not suppporting it. She told me I just had too much going on.

I was put on Plaquenil and Methotrexate which I hated. BUT found out Methotrexate stopped my SPASTICITY in my legs. What a treat. STiLL I didnt like the side effects so I was taken off of it. Then saw another Rheumy as she left her practice and he said I do not have Sjogren's without pos labs.

BUt.. he thought all my symptoms could be an autonomimc problem. Fact is the 2 neuro's I see didnt even read his letter. So I told the MS neuro who said I should see a cardiologist instead. AND again now thinks I do not have MS and now no Rheumy either.

So.. still a mystery. Hope you get relief. I found RESTASIS that the Rheumy put me on CREATED tears and now I hardly need it.

Try it, but it takes a prescripton.

Warmly, Jan

dry eyes
 

My mother has scleroderma and had her tear ducts sealed to help with the dry eye and it worked wonders. Her eyes were so dry she would constantly get infections.
My sister has sojourns and says you have to have a humidifier running especially at night. So that would be worth a try, but I think the plugs will help you a lot. She has not had too much trouble with dry mouth either.....but my mother has lost most of her teeth to exteme dry mouth. She takes a pill called Evoxac or( somthing like that) that has really helped her with that so there is some help out there if you need it.
She uses REFRESH PLUS eye drops for moderate to severe dry eye in the individulal vials to make sure they are sterile as dry eye can have problems with drops that become contaminated.
She also takes glucosamine for joint damage.
I'm so sorry you got hit with a double wammy. But autoimmune diseases often have piggy back diseases.
I just talked to a guy the other day who has MS and Lupus.:eek: Its awful that you have to deal with something else.
Big hugs to you:grouphug:

My sister was also told Sjogren's and she treated her symptoms like that for years! The eye plugs were a gift from above, and solved the dry eye problem.

She has lately been dx'd with lymphatic colitis. She has allergy troubles, digestive troubles, terrible skin rashes. It is another tough disease!

I will see a rhuemy soon, and he will completely rule it out. I DONT have dry mouth, but I do have very dry poop. I drink tons of water through the day. I have a humidifier running 24/7 and I feel like a dust ball. My skin is better with the humidifier, but it is still prone to dry ezema. I used to have severely dry mouth in the past, but learned some hygiene tips that really worked, and I dunno, it just all sorta turned around.

I ordered the EyeEco kit for severely dry eyes. Its a double eye cup style blind fold. it has soft pads in it that can be wet. There is a heating pad that can be placed behind the pads to make a spa bath for your eyes. I only got it yesterday, but it was quite wonderful to take a break. The eye cups block out ALL light, so its very dark, and forces your eye to rest. That will be a great tool for the MRI machine. I MUST cover my eyes in there.

I have not been given restasis, but I do take natural tear products. I only use the single serve stuff, to beat the preservatives. Systane is a product that lasts longer than normal natural tear products. My drainage ducts are wide open, so no matter what goes in, it slides right into my sinus. so, I will be happy to keep any moisture. July one is my day for plugs. I hear that you cant see/feel/or be bothered by them. I am looking forward to not waking up with my eyes so dry I almost have to peel my lids off um.

This has been quite the learning journey. My MD threw in all kinds of other tests like Lupus, and Sed rates, and Arthritis markers with SSA and SSB testings. All came back within normal limits. I hear many who have big sx and normal blood tests, get a positive lip biopsy. I am happy to not have any new diseases. I have my hands full with the old one.

I will let you know when I get the plugs. Did I feel um? did it hurt? do they help? and so on.

Thanks for the cheerleading. you guys are awesome.

Good luck with all your appts and treatments. I did not know about the eye cup thingy... how do you get it?

ANd make sure your MD faxes over all results to the Rhuemy as that will expediate the process.

Keep me posted ok?

Jan

This stuff is the BOMB! I am thrilled with it. It is eye cups that you wear like a blind fold. IN each cup, you can place a hot pack or a cold pack and a wet sponge insert for an eye spa. it really relaxes your eye. hydrates and soothes. At night, you can take the sponge out and wear as a black out mask. it cuts ALL light. I gotta use this in the MRI. I sleep with my eyes slightly open, so they dry out even more. This forces my eye to relax and stay closed.

http://www.eyeeco.com/

I dont own stock in the company or know anyone that works for it. I happened across the link at the sjogrens forum. I ordered extra hot/cold packs today. I am in love!

Dejibo:

So glad to hear it works for you. You have a lot going on and you needed to get a break.

Crap! Crap Crap!
 

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!
:hug:
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.

:hug:

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.

what tests they use
 

ok, told you I would come back and correct the six sx of critera for the dx.

1. Occular (1 of 3)

Dry eyes for longer than 3 months.
Sensation of a foreign body in the eye
Use of artificial tears more than 3 times per day for longer than 3 months.

2. Oral sx (1 of 3)

Dry mouth for longer than 3 months
Swollen salivary glands
Need liquid to be able to swallow foods/pills

3. Occular testing (1 of 2)

Unanesthtized Schirmer test << 5mm/5min (they put strips in your eyes to measure tear flow
Vital eye staining. (a vegetable dye is added to your eye and they can see the dry spots on the cornea, or eye surface

4. Positive lip biopsy (focus score >>1/4mm2)

5. Oral tests (1 of 3)
Unstimulated salivary flow rate <<0.1 ml/min
Abnormal Parotid sialography
Abnormal salivary scintigraphy

6. Positive Anti SSA and/or SSB or ANA blood test.

As an auto immune, this SJS can attack the mylin as well as the joints, and the mucous production in glands. it can cause chirriosis of the liver, and pancreatitis, as well as inflammed joints, and severe dental disease due to lack of saliva to wash the teeth clean of bacteria.

Still no word yet on if I have primary, or secondary. I just want to wake up and find out this was a dream. That I am 20 again, and have all my life choices to make with the knowledge that I have earned today. boy would I change a few things.

Sending you positive vibes for the best outcome possible. I'm not sure from reading your posts what that would be.:confused:

It seem either way, you've got a big challenge that you're facing. Please keep us posted.:hug:

Blessings,