New here!

[kimboloco]

Hello!  I was diagnosed approx. 3 years ago when I was having issues with my contacts during an extreme tax season.  After various attempts at figuring out what was up, my opthamologist send me to the specialist who diagnosed me within 20 minutes (figuratively speaking).  After wearing contacts for manymany years, I am now stuck in glasses.  When I was pregnant everything seemed to go into remission, one of the main reasons I would consider doing it again.    The fatigue is perhaps the worst part for me, despite trying to eat better, weight loss and exercise.  I am considering the probing technique and look forward to hearing if anyone else has done it to date.  I am still a little apprehensive about it.  Will have to look up all of my stats- it has been so long that I don't even remember what my counts were.  I am struggling to keep up with the regimens of the warm compresses/drops/gels etc.  There were plugs in all 4 of my ducts but we had to take 2 out due to overflow.  I have also hqe partial plugs and have clogged them twice so my eye specialist things that we will not replace.  The rheumy can't do much more, cortisone shots don't work for me and I feel the Plaquenil isn't helping either.

[Cheryl]

Kim,
   It's nice to meet you.  I hope this site will be as helpful to you as it has been for me.   I'm sorry I'm not familiar with the probing technique, but no doubt someone else will have some experience with it.  Best wishes!
Cheryl

[Patze]

Hi Kimboloco,

Let me welcome you to the SJS World and family!  Please do look around as there are tons of topics that you just might find interesting, and let's not even mention the oodles of great members!

Now you've mentioned MG probing, are you talking about "unclogging" the meibomian glands?  Now I've seen some talk about it on another board, but I don't know a whole lot about it.  Hopefully a more knowledgeable member will stop by soon, and be able to give you some up-to-date info on it.

I see that you're on Doxycycline, the opthamologist had me on it for six weeks when I came up hypersensitive to it, ugh (I've been having problems with my eyes for several years now with MGD/dry eyes/chronic blepharitis).  I know what you mean about trying to keep up with the compresses, drops, gels, eye washes, yadda, yadda, yadda (it can be a bit maddening!).

Again, welcome, and I hope to be able to chat wit you soon.

Take care -

Patze

[Joe S.]

I am sorry that I have to say "welcome" to this form. I do not understand the probe but I have had problems with some of the meds and use alternatives. Take care of yourself and find ways to enjoy your family and your life.

[Scottietottie]

Hi Kimboloco 

Welcome to Sjogren's world. I'm another one who is clueless about 'probing' but wanted to say hello!

Take care - Scottie 

[lynnmarie219]

Hi Kimboloco!

Welcome to Sjogrens World! I hope you are able to gain some new information as well share what you have learned over the years with others on these boards! You will also find all the support that you need from the wonderful members who visit here on a regular basis.

Welcome to the family!

[kimboloco]

Thanks for the warm welcome! I look forward to great conversations!  Hopefully will have a lot of snow days here in the midwest so I have some time to kill at home.

Patze- I am actually off the doxy now, debating what to do.  My digestive system just couldn't handle it, but my specialist would like me to stay on it.  I am getting by with the minimum amount of 'stuff' to do.  I need to get with the program better to be truthful. 

[Pisces24]

Hmmm you got me wondering if anyone with SJS wear contacts!!
I wore contacts for many years but became "allergic" to them.  I would have one eye gunk up on one contact, I'd clean that and the other would get gunked up. I seem to think I had this "contact" problem right around the time my gp was watching some of my bloodwork numbers elevate. My bloodwork #s started the whole mess of me doing the "dr shuffle" until I was finally diagnosed with SJS in March 2009 (after 6 yrs).  I guess I was lucky as for the most part I felt fine except the drs kept telling me I wasn't  and driving me nuts.  Bless my gp as durn it, somebody was going to tell him why I had those abnormal blood numbers! He was like a hound dog in a woodpile after a rabbit - didn't stop. LOL 

Sorry it took soooo long for them to diagnose you with your bad symptoms. It is odd how some seem to come and go. Gosh I hope I don't get the weight loss as I've never been over 115 lbs and at around 100 lbs my gp would be upset.  I am not sure what the "probing technique" is either?? 

How'd you get positively diagnosed?  Mine was just blood test - very high for A&B and Schmer's test where eyes hit a 1 and 0. I had sooo much testing for 6 yrs that I am surprised SJS wasn't one of them. Must be one of those Specialized odd types tests.

[Patze]

Hey Kimboloco,

Yeah, I have problems with malabsorption issues lately, and I understand how you're feeling.  I wasn't crazy about the doxy, but I understand it's helped several members.

Yeah, hate the twice a day eye "regimen", but are you going to do?


Patze

[JannaLee]

Hi Kimboloco!

Darling name!  We have another Kimbo on the site and she's loco too, so you will fit in just fine around here!

I don't know anything about the probing thing either.  Is it a new procedure?  How many times has your doc done it?  You are right to check it out before agreeing.  I hope it will be a simple thing that will change your life and all the rest of us will get it too and change out lives too!!

We will all be wanting to know what you learn.

Interesting about your disease improving during your pregnancy.  "They" (medical researchers) suspect hormones play an important role in this disease but most women experience increased symptoms while preg and post natal.  I sure did!

So lovely to meet you!
Janna

[kimboloco]

Pisces- I would say that I became 'allergic' to mine as well.  I was cleaning the lenses multiple times a day, thinking it was just dust from all of the paperwork and long hours looking at the computer.  I believe I was blessed to get diagnosed as quickly as I did, I am grateful to know I wasn't completely crazy for the fatigue factor which was bad for about 2 years.  My regular opthamologist tried different lenses/eye drops/etc with no improvement and had a feeling that there was more to it so she sent me to a specialist.  He started asking me questions regarding fatigue, asked me to get a blood test down the hall, and within a matter of weeks, I had my answer.  Shirmer was a 0 and .5, and my A&B was high.  I go to the rheumy in January and am going to get my original numbers so I can post.  Oh, and don't worry, the weight loss was after the child plus some additional- back to a very healthy weight and truly had nothing to do with SJS.

JannaLee- My doctor is pretty cutting edge, helped devlop restasis, and I know he has been doing it awhile.  It is a relatively new procedure, but I haven't met anyone who has done it.  During my pregnancy, I had so much more energy, even in the heat of tax season and working crazy hours.  Plus my anxiety got better without any medications, etc.  It was really wonderful for me, my husband was totally spoiled.  He still had to rub my thick ankles however!

Probing:  http://www.ophmanagement.com/article.aspx?article=103161

Just had it done on Thursday- will do a sep. post on it and update it as the month progresses.