Refresher course-Sjogrens-depserate

[kathylee]

Hi there,
I need a refresher from the experts--you all. I used to be here alot but when the Myasthenia-type symptoms came I had a big down slide. I cant read much because the myathenia affects eyes so much so you are the best resource.

First are blood tests the final word for Sjogrens? Mine was positive then not at Mayo. The university at home said yes the biopsy is positive but Mayo said they disagreed. But I had gone to Mayo for Myasthenia and wasnt minimal about all I go thru with Sjs with their Rheumy. My focus at Mayo was getting my weakness including my breathing answered not the Sjs.  HOW many of you are diagnosed without positive blood tests?

I found a document that easily stated what dehydration 'dry' versus sicca 'dry' so my daughter can better advocate for me ( my last question here).  The reality of the day to day for me now is I could lose my aprtment because some minor mold damage occurred because I need humidity quite high at nite to not be woke by dry lung which is compounded by my weak breathing muscles from myasthenia. WHEn for those of you who have the more severe dryness how do you cope with dry at nite? I dont know what options I could use? The Sjogrens Handbook says hydrate well and for me this sure helps but it does take an enormous amount.

As an example, I had to fast totally before my eye surgery...no fluids either from the nite before till in hospital the next day. By 9am my strength was even worse than normal. Also my eyes and mouth were the worst in years. I had told them in surgery pre a week before that I would need IV fluids ASAP or would be 'in trouble.' Some how that got lost so I was beggin for them to hook me up cause they just didnt understand it. But when I had gone thru a full bag of IV fluids and was still so dry...no spit in my mouth they started to get the picture. They started a second bag of IV fluids. It wasnt till that was all in me that I was feeling better.

IComputer acting up so if you have thoughts I would sure appreciate it .   Emily K

[kathylee]

I found the answers I needed in the Diagnosis Trouble by PrincessLeah. JanaLees info especially was what I needed. I will post more there. 

I am sorry about the name confusion. Emily is a name I use on boards. But so is Kathylee. Sorry for the confusion. I am me and dont mean to come across as confusing. I am truly struggling with my thinking far worse these days.

Emily K

[sleepy]

Sorry to hear about the severity of the dryness, I don't have it that bad. I was diagnosed through blood work, it only took them 20 years to get it right! I am still playing the, "try this med" game.

[Scottietottie]

Hi Emily 

I got dxd without bloodwork - well there was bloodwork but it was mildly positive for lupus - so they dxd on symptoms, like Sjogren would have done. I'm in the UK though, not the US.

I'm afraid I don't know what to suggest for night other than a humidifier.

Take care - Scottie 

[inga]

The last thing you want exposure to is mold.  There are some additives you can put in humidifiers that cut down on micro organisms.  Have some one clean off the moldy areas with a bleach solution.  You don't need a lot of bleach in the water.

I wonder if your kidneys are off kilter and you are excreting too much fluid.  Check out Inappropriate Antiduretic Hormone.

Once one has a + lab from anywhere, leave it to another clinic to make it negative.  This is common place.  If it was + once, it seems to me it is positive.

[kathylee]

Inga,
I have questioned that myself...the kidney issue. I just talked to my internist nurse this morn about how fluids go thru me too fast. They want me to try vit D pills again. I said lets do but will you be there when I have the big hit after. I am wondering what the answer will be. When they had me fast the whole nite before a surgery I was so miserable and it was my eyes so they gave me IV fluids. They put a whole bag in me with little effect. They were surprised. After the second bag I was finally better some. I headed for surgery but suddenly had to pee. They put a bed pan under me which I literally filled. I warned them it was so full I was all wet on my bottom. Again they were surprised how I'd filled the whole pan to the top.

I do use 2 humidifiers at nite. but finding one that will accurately stop when the humidity gets too hight during the nite is impossible.

Emily K