Maybe on my way out of limboland???

[ynevar]

I just got a call from the specialist in Seattle.  Some of the lab work came back indicating Sjorgren's Syndrome, an autoimmune disorder.  I need to get a lip biopsy sometime soon and see if that confirms his preliminary diagnosis.  

Been reading up on it and it does sound pretty similar to what I have had and have showed over the past year or more.

Now---just to get the definitive diagnosis and treatment... which is pretty much just treat the symptoms.  No cure (yet).

-Y

[ynevar]

I'll try anything once.... I hope I react well to whatever they give me, when they finally end up giving it to me LOL

-Y

[illinwithoutacause]

hi there, y,

i am glad you didn't give up, either, and i am sure with your perseverance you will figure out what's going on with your digestion as well.

for what it's worth, i know some people respond poorly to plaquenil, but i was on it for most of this year and did not have any side effects which surprised me since i react poorly to just about every drug under the sun.  

take good care and keep us posted.

best wishes,
binx

[ynevar]

Binx,

Thanks for your good words!  I realized that the only way I am going to get them to listen is to make them listen.  I have been persistent and there is a lot documented, in the past year... that I don't feel well and a lot of them are symptoms of sjogren's.  I am just glad I didn't give up.  I am afraid I have other things involved like the intestines since my absorption is really low on a lot of things.

I am not sure but will ask about the Plaquenil.  I sure don't want to lose hair though :(

I am wondering how I'd respond to Methotrexate, seems I hear a lot of good responses to that.

I am just waiting to hear more from the doctors.  I'd really like to see the specialist in Seattle again, he was the first one to really listen and actively figure things out.

-Y

[illinwithoutacause]

hi ynevar,

glad to hear you are being your own best advocate.  it's the only way we can get anywhere these days, unfortunately.

has anyone talked to you about starting plaquenil at this point?  it takes a while for it to kick in, so if they're pretty sure you've got sjögren's, maybe you could get ahead of the game and start the medication??

just a thought.  hope everything else is going well for you and that you are feeling okay.

best wishes,
binx

[ynevar]

Thank you Faith!

I went in to just give hell again... because nothing had happened...

Things are finally starting to happen.

I had a bunch of records sent to the Rhuematologist.  Showing my repeat sinus infections, my bartholin's gland cyst problems and my dry eyes on my last 2 eye exams.  I think I'll have a Sjogren's diagnosis before the end of the year and hopefully treatment.  I am tired of being sick... sick and tired of being sick and tired!!!

GAHHHH!

[faithhopegreatestlove]

So glad that you are being heard, and that you have found your voice!!!!
--faithHGL

[ynevar]

I just went to my new primary care doc, at the clinic where I usually go.  My doc is retiring and so I picked a new doctor.  I lit a fire under his arse and I am getting sent back down for my lip biopsy sometime.  I am pretty happy I am making them move.  I can't walk today, my right ankle is so pained it is sick...

I was a force to be reckoned with this morning and glad I was, things are happening.  I know I can't go on like this.

-Y

[ynevar]

Yes I am glad they are still on it.  The ENT here is the one that told me I had the brain of an 80 year old and asked if I had ever been diagnosed with MS or mini-strokes?  Then gave me my disk of my MRI and said you need to get that to a neurologist.  This is 4 months after the MRI was done... I have no desire to see him for it.

I'd rather go get it done in Seattle, where my doctor can be updated on the results and then I can start treatment if that is the definitive answer.  I don't like the doctors here LOL Guess there are some things that are better in a city vs. Alaska!  LOL  Fortunately I can travel to figure this out.... *sigh*

Oh yes... let me see if I can take a pic of the one I am doing... not sure if it is done now or not... is frustrating me...

-Y

[faithhopegreatestlove]

Hey, Glad to hear that your doctors are still on it. Will you have to travel back to Seattle for the lip biopsy or is that something you can do where you are? You sure sound better today than yesterday! Post another painting for us when you get the chance; the rest of us could use a boost, too. :)
--faithHGL

[illinwithoutacause]

hi ynevar,

i'm so glad you have gotten an even more definitive lead--that is wonderful news.  sjogren's can be a virtual MS mimic and is treatable, as you point out.

i actually participated in a sjogren's syndrome study back in february and had a lip biopsy which revealed i may have sjogren's, but my blood work is normal, so i cannot get a dx.  the lip biopsy wasn't a big deal for me--there was minimal pain and a slight amount of swelling for a couple of days.  i can't even feel where it was now.

thanks for keeping us posted as your results trickle in.

best wishes,
binx