Thank you, and yes, thanks again.

[Stillinlimbo]

Wow,
I must say,  I am overwhelmed at the number of welcome responses I have gotten after my first two posts just this morning. So overwhelmed that I dont know who to say thank you to first, or who to answer first!
Yes, I have severe neuro symptoms, brain fog, left facial pain, all of it, all of the MS sx, that now, since my eye dr , appt, I am re-thinking things. I cant wait to call my GP tomm and tell him about my eye dr visit on Friday! After reading several of the posts here, and looking up Sjorens', it makes more sense, and fits more than MS did. I am so happy! yea, thats wierd, but, its been a long year and a half. Crossing my fingers and toes, praying too, and again
Thank you all so much. You have tired me out, I will be back and will continue with my questions I'm sure!
Cathy

[wednesday mc haggis]

cathy

glad to see your feeling better within yourself , not good having anything really, but i can understand that SJS is in many ways a happier diagnosis, good luck at your Gp`s visit, thoughts with you for that .keep us posted on how it all goes for you

T x

[JannaLee]

Cathy,

It feels so much better when the pieces all start to fit and you can wrap your mind around a diagnosis.

So glad it's all getting figured out for you!

Janna

[harrigan]

Good luck Cathy - hopefully your GP will be as good as mine and be pleased you have looked up and come up with suggestions. I saw a Rheumy for the 1st time just a week after that visit and was diagnosed and started treatment just 4 weeks later.  That was 3 weeks ago.  I'm on Plaquenil and amatrptyline.  How long were you on the Plaquenil when you begun to feel better?  Hope things happen quickly now it all seems to fit together - good luck and keep sharing on here xx Ailsa

[Stillinlimbo]

Alisa,
I was on the meds for about a month. I felt better, but, was it a coincidence? I cant remember why I stopped taking them, but, there may be something to this. I sure hope so.
Thank you so much
I have renewed hope today that just maybe I can get dx,ed ,,,,,,,with something!
Cathy

[lynnmarie219]

Even though none of us wants to be diagnosed with anything...it is better to at least know what you are dealing with so you can face it head on!

Good luck to you...keep reading and learning all that you can!

[Stillinlimbo]

Hello to all,
So, after this year of being ill and undiagnosed, I have had it. And my GP keeps saysing "we're going to do this, and that, and I want to try you on this, and I want to order this, and blah blah blah". After the past few days of reading all the great info in here, my symptoms which some thing is MS, others think not, and still others dont know what to think. Snce my sx fit, (they fit into about half dozen other diseases too), but, first I called the pharmacy to see if the Plaquenil I was on last year and stopped, still had any refills on it, and I went and picked up a bottle. And took one. I decided if it worked last year, or if it was just a coincidence, it is worth a second try. Then, I called my GP, who hasnt returned my calls despite the 3 msgs I left, just since Monday. So, I got ahold of him, and told him I am going to try Plaquenil, AND, I want a lip biopsy. He was heeing and hawing, and said he wants to send me to the Mayo clinic, and he also said my labs were all normal. I said, a lip biopsy is better than the labs. He said, ok, go ahead. Du?  I was going to anyway. So, I opened the phone book, called an ENT and am scheduled for a lip biopsy April 8th. 
So, now what? I saw a post on here that explains how it should be done, and what kind of reputable lab it gets sent to. Any other advice?
Thoughts on my what some might call impulsive decision?
Thanks
Cathy

[JannaLee]

Not impulsive! 

You've researched and have a better handle on things and are taking a proactive approach!  Good decisions!!.. so long as your doc is okay with you starting back up on the plaquenil.  Remember it can take 6 months before plaquenil is effective.

I am proud of you for taking an active role in your medical care!

Janna

[Patze]

Hi Cathy,

What Janna said!   

Seriously though, please be very careful with the doctor that does the biopsy, as not all doctors do them well.  I won't go into the whole story (I know, too late! ), but the ENT that did mine did a lousy job and I now have a permanent numb area on my lip, as do a few other members too. 

Also check into the lab that will be processing the sample as not all labs see enough samples to read them correctly.  There are a few stories here where the member actually took the "negative" sample to a lab that reads a lot of them, and the same sample was now "positive".

Take care and do keep us updated!

Patze

[Stillinlimbo]

Patze,
Well, I'm just going on blind luck I guess as i did call an ENT out of the phone book, but, I do know somewhat of their reputation, not that that means anythng these days, as I'm finding out. So, how do I know about the lab? Ask the doc what  lab he uses and call them?
Any ideas there? If done properly, I would assume the lip will be swollen and sore? How long does this take to heal? 
Thanksi
Cathy

[Patze]

Hi Cathy,

The lip biopsy is a "sore" point for me, as I learned here how it should have been done vice how it really was done, it breaks my heart. 

I would ask the ENT's office, and ask your regular doctor's staff to see if they know anything about the lab that the ENT's office will be using.  Sometimes you might be surprised what a doctors staff knows about which labs do a better analysis of a sample.

I won't bore you with my story as it's already in the Mouth section, (now I'm not in the medical field, and this is only from listening to others who've had this procedure done), if it is done well, you might have some swelling and might be sore for a few days.  It's so hard to gage as some members had a lot of swelling and pain, while others had very little (if any) swelling and pain; everyone has such a different reaction. 

Good luck with the procedure and keep us updated, okay?

Take care -

Patze

[Wynter]

My lip biopsy was simple and only took a few days to heal. I have no problem with it. Just make sure the doc get enough samples. All my blood work and biopsy are negative. I don't think the ENT got enough sample. So, even if you need a few more stitches, it's worth getting a sizeable sample. I still don't have a diagnosis and and planning on going to Cleveland Clinic or John's Hopkins. Good Luck!

[JannaLee]

Cathy,

I have to reiterate what Patze said and suggest you ask the ENT if he has done a lot of Sjogren's lip biopsies because you know of a couple people who didn't get a good sample and one with permanent numbness.

While the numbness is less common, the poor sample isn't.  It is mentioned in Sjogren's literature as a problem with delayed diagnosis.

Janna

[Stillinlimbo]

HI,
I copied the info that JannaLee sent from a previous thread about the lip biopsy and labs, and how it all should be done. I will take that with me, and ask verbatim, all the questions listed from what I have copied. Hehee, I dont care if the doc is insulted or not!
Cathy

Hi Cathy,

What Janna said!   

Seriously though, please be very careful with the doctor that does the biopsy, as not all doctors do them well.  I won't go into the whole story (I know, too late! ), but the ENT that did mine did a lousy job and I now have a permanent numb area on my lip, as do a few other members too. 

Also check into the lab that will be processing the sample as not all labs see enough samples to read them correctly.  There are a few stories here where the member actually took the "negative" sample to a lab that reads a lot of them, and the same sample was now "positive".

Take care and do keep us updated!

Patze