Bloodwork in ............ ummmm

[Joojie]

Negative on the Sjogren's bloodwork - I guess I am not surprised.  Negative ANA.  Sed rate not elevated.  Negative HLA-B27 (thankfully).

BUT, my internist said we are not giving up - that there is something going on - I am to see him in 2 weeks again.

He will then schedule me for an opthamologist, and a ENT referral.  He is still going back & forth with Sjogren's and/or some type of spondy - but the SI joints not showing up with any inflammation - that's where the raodblock comes.

Had my bone scan done - showed inflammation in the sternum, ribs, and xyphoid process, and knees.
Small amount in thoracic spine.  Nothing in the SI joints.

So  - the wait is still on - and this is the hardest part.  I will deal with whatever is brought my way - I just want to know WHAT it is I am dealing with.

My mouth is still burning, but only dry at night and in the mornings.  My lips are extremely dry and cracked.  Eyes - burning constantly.

Know that I am one of the 47 million in this country that is uninsured.  Been on SSDI for almost 2 years, and will get Medicare this coming March, and then a supplemental coverage as well.  The insurance hubby has now - everything is listed as 'pre-existing" ....... so all of these bills - oh well.  My health is worth it I guess - but it shouldn't be this way - not in the richest country in the world. Or at least we used to be.  I know that I am not alone ..........

Thanks for letting me rant ....... this has been a tough road - but I don't feel so alone now that I am posting here.

Peace all ........................... Nancy

[Scottietottie]

Hi Nancy 

I totally understand why you want a definite diagnoses. Once we know what we're dealing with - we deal with it. It's the uncertainty that's so stressful. I'm really glad your internist is on your side. That must be a help.

You must have read in here about people with negative bloodwork.  That could be the case.

Don't give up. Hang on in here. Hopefully further tests will give you the answer you need.

Surely SjS can't be a pre-existng condition when you don't have a diagnoses of it??

Take care - Scottie 

[irish]

Nancy, Sounds like you have a good internist and that is really lucky for you.

If you don't have a diagnosis what is the pre-existing condition that is preventing you from getting insurance on hubbies policy if I may ask. Like Scottie says, doesn't make sense. Good luck. I know it!!!! Our country has really gotten a lot of things screwed up over the years. Too many politicians of both parties more interested in themselves than helping others.  Irish

[Pooh]

Good luck Nancy and hang in there.  There be better days coming.

Hugs, Pooh

[pudmott]

Hi nancy
Couple of questions for you.
Are you on prednisone or any other antiinflammatories cause if you are they will tame the inflammation sufficiently to give you  a normal sed rate. Also did he do your CRP. That is a more sensitive inflammatory maker than the sed rate.

LIke you i am sero neagtive and just got my diagnosis last week based on other tests. I hd a schirmers test for the dryness of my eyes and then i had a radionucleotide scan of the salivary glands (also known as a scintigraphy scan) painless procedure. Both of these showed extreme dryness and my doc made the diagnosis based on that and my other symptoms of fatigue joint pain etc. Maybe you can ask for those or at least tell hm about it.

Im sorry about the insurance thing. You guys in the stated have got a weird health system. Over here (Aus) when we join a health fund if we have preexisting conditions we just have to wait 12 months before we can claim anything for that condition. After that theres no problem. My scans are part paid for by the government. Everyone gets that regardless of working or not and with medications if i spend a certain amount of money on medication within a 12 month period i get my meds reduced to $5.00 until the new year. If you are on a pension and reach the threshold you get them for free.
My heart goes out o all of you when ihear about insurance and what they wont do and how much it impacts on your ability to get treatment. I consider myself so fortunate to be where i am and know that my medical costs will be assisted no matter what.

I hope you find some answers soon nancy and that the bills don't get too big. I'll be thinking of you

Pud