Bloods Finally Start to show results after 4 years of testing !

[kindandcaring]

Twice in the last month my ANA has been postive

"ANA Speckled tr 1:80"

Only took 4 years of testing..lol

This autoimmunity is a weird one....

I hope you Doc's are watching 

I hear so many people being dismissed by their Doc for having neg bloods.
Clearly we are a long way from diagnosing these diseaeses by using the current blood tests alone.
Until then Docs must treat by symptoms.

All my best

[ginger_pops]

HI
WHEN I WENT TO GET MY RESULTS BEGINING OF THIS MONTH ,THE RUMMY SAID THAT MY ANA WERE ABNORMAL BUT DIDNT SAY WHAT JUST SAID THAT BECAUSE MY INFLAMATION LEVELS WERE NORMAL I DID NOT HAVE SJS AND DOESNT WANT TO SEE AGAIN, SO NOW AM WAITING FOR MY LETTER TO COME THROUGH THE POST WITH ALL MY RESULTS ON, THOU MY RESULTS DID SHOW A ENLARGED HEART AND UNDERACTIVE THYROID I CARNT UNDERSTAND DR ANYMORE FED UP AND CONFUSED
LINDA X

[Joe S.]

Linda, Try to find a DR that will hang in there with you through all of the symptoms. From my experience none of them like to break the news of an AI disease. After reading some posts by BillyDude I went to my GP and said "Dry Eyes, Dry mouth, Dry A**, What do you think it is?" and we moved on.

Hang in there and manage it as best as you can.

[~elizabeth~]

I'm sure these things go in cycles, and it's a matter of luck catching them at the point in the cycle when they are high, rather than when just hovering under the upper end of 'normal'. That was my experience with thyroid problems, the condition was flaring up and down for some time. Eventually the bloodwork caught up with the symptoms, despite previous 'normal' tests.

A good doctor will acknowledge the variability of these complex conditions, and assess the probability of a condition based on symptoms, rather than just look for the first excuse to remove you from their case load.

[Patze]

HI K&C,

Congrats that you've found the light at the end of your tunnel!  That is such good news!


Patze

[kindandcaring]

Thanks Patze !

Are you seroneg for ANA..I do recall you were seroneg for most things as well ?
Ive been tested almost every month for 4 years..so i know its starting to pop its head up more.
There is still so much to learn about this immune system...

Actually this is the start of things to come...and by the end of it all..I should know much more.
Im being admitted to a hospital far from my family next week for a minimum of 5 days. (actually however long it takes)

lip biop
liver biop
PET Scan
endoscopy possibly and the other end ...
More bloods
muscle biop
nerve biop
lumbar puncture

I do hope thats all LOL....(probably not)
I have to face the fact that Im so screwed up

Recapping my Autoimmune issues

Liver Dysfunction - Possibly seroneg Primary Biliary Cirrohsiss - hence liver biop
Isaacs Syndrome Hypernerve excitability - hence muscle and CSF testing and cancer scans
Hashimotos
Gastric Parietal Antibodies (could be Autoimmune Gastritis) - hence endoscopy
Ankylosing Spondylitis
Sjogrens - hence lip biop



I wouldnt do all this testing unless I was in bad shape...and I am..this last year Ive hit the skids..and can see the writing on the wall so to speak...just too many issues...work has been reduced..

Still we have to get thru this for the family...and I need them just as much!

[Patze]

Hi K&C,

Yeah, still sero negative for everything but the ESR (always above normal), amazing!

I get tested every year for the SJS markers and every six months for the thyroid issues.  I couldn't deal if I had to be tested every month, whew, I hate needles with a passion as is! 

Good luck with the hospital stay and I hope that your doctors can figure out everything and can finally help you.

Take care my friend,

Patze

[Dolly Dimples]

                           K&C,  I am sorry to read that you are in such a bad state!

                               I hope you get the right answers to the problems,
                                                                                    and that soon you will be feeling more like your old self!

                                                     We will all be rooting for you while your away from home & family..
                                                                                              Good Luck all the way, Dolly x
                                                                                                                                         

                                               

[eyeamdry]

K+C, you certainly have alot going on.   I'm sorry, but glad you've gotten some results.......now for the fixes.  This positive on your bloodwork may not stay that way.  I was first tested as positive, but since being on Plaquenil, methotrexate and other meds, my bloodwork shows normal on those things it was positive before.  Probably the meds taking things down a bit.  It does NOT mean that I feel good, though.  Don't be surprised if the positives disappear.  lucy

[kindandcaring]

Thankyou guys for your warm replies..! 

Im still in Hospital..another couple of days or maybe 3.
Just waiting to get in for a PET scan...to see if I have Cancer or no Cancer.
Yet the waiting list for this machine is a big Wow !

Just been told I have a fatty Liver..anyone else  ?
Im surprised as I had the same ultrasound 18 months ago and it was clear...so either they did it wrong the first time or I dont know.
The funny thing is my Cholesterol is normal....? If I sound unsure..I am..Im sure there is fatty liver..just not understanding how its getting fatty ? anyone with similar issues..please do post, any help appreciated.

Cheers

[Scottietottie]

Hi K&C 

My GP says I have a fatty liver. Haven't had tests - haven't had treatment - she sayss she can feel it though.

Take care - Scottie 

[kindandcaring]

Hi K&C 

My GP says I have a fatty liver. Haven't had tests - haven't had treatment - she sayss she can feel it though.

Take care - Scottie 

Hi Scottie,
Thx for your post

Did she tell you how you are getting a fatty liver, or how to help stop it progressing any further to Cirrhossis.?

The advice I got was to eat a low fat diet and keep my lipids in check...however I am already and my lipids are in check

Confusion reigns supreme!...I was expecting to get a Liver Biopsy...and likely test positive for PBC... however as soon as they saw fat in the liver they stopped investigations then and there..

[kindandcaring]

Scottie

Here is some more info...from gov site

NASH
Nonalcoholic Steatohepatitis
http://digestive.niddk.nih.gov/ddiseases/pubs/nash/

Interesting from that information is that "release of toxic inflammatory proteins by fat cells (cytokines)" can be a cause...this could tie in with having Autoimmune disease.

Certainly its something to monitor, if its the autoimmune process thats driving it, no treatment unfortunately..cept for the usual known supplements to try and 'help' the liver.

My Best

[Scottietottie]

Hi 

Thanks for the info. I was basically told to try to lose some weight and to steer clear of alcohol. (Long way off being alcoholic or anything!)

Take care - Scottie 

[kindandcaring]

Scottie

Please do look it up...can become serious, there is much more to it than the innocuous phrase "its just a fatty Liver"
I say this because of your Autoimmunity same as me, we are a little different from Jo Blo.

I dont drink at all    except tea, water   I eat a low fat diet..yet here I am with Liver Disease.

its a popular misconception that because people call it "fatty' that somehow that person has been overindulging.
For many this could no further from the truth.

Im thin, I dont drink...the Liver Disease is being driven somehow by an Autoimmune Process, possibly some kind metabolic dysfunction(insulin resitance, pre-diabetes)...or yet to be defined.

Im no Doc however getting an Ultrasound to confirm what your GP thinks would seem a reasonable step given the circumstances and unknown path of this disease...if positive you would least have a benchmark to measure disease progression...hopefully none!     on your next  u/s visit.

My Best