Friday, September 30, 2011

blood results

Many vials of blood taken. Only including abnormal results below

Eosinophils .2!!!! Is that from taking prednisone?
Creatinine 1.3 (known issue, seeing nephrologist today)
GFR - really low. Probably get another "take home 24 hour pee test".

What's really strange, SED rate is normal. That's insane. Maybe the pred again?

ANA Screen With Reflex to IFA Titre
Positive, A

CK or CPK not taken, as crazy as it sounds, since I've been re-diagnosed from PM to MCTD, my muscle enzymes have been normal but the JO1 Antibody is out of control.

ANTI-JO-1 Positive, 3.9
SCL-70 AB,EIA Positive, 1.0, A
SSA >8.0 Positive, A
SSB <1.0 Negative

LOW VITAMIN D!!! Supplementing!

ANA Titer & Pattern
Anti Nuclear AB Titre 1:40 High (it's been MUCH higher than this before)
Pattern: Nucleolar (A)

Thursday, September 22, 2011

My current rheumatologist

Tomorrow I have an appointment with my rheumy. I just received a letter in the mail that effective Dec 3, he is retiring!
This is GOOD for me because I wanted to find a new one anyway. Now I am free to ask him tomorrow how to get an appointment with someone in one of the top hospitals for rheumatology

Wednesday, September 21, 2011

Acetyl Cysteine (NAC)

Has anyone heard of Acetyl Cysteine (NAC)? I came across it when I was searching for Clinical Trials and found a trial that uses this supplement for Interstitial Lung Disease (ILD). I ordered some from Amazon, and the supplement has seemingly raving reviews (mostly for Bronchitis).

Wikipedia NAC
See "index" on page for ILD, etc.

A promising Amazon review. You never know ....

In search of best doctors for Sjogren's, MCTD

Found some good links for starters: 
US News Best Hospitals
Johns Hopkins Division of Rheumatology

Can any readers give me advice on how to get an appointment with a top Rheumy?

Found one .... crap, how to get an appointment with a Physician-in-Chief Emeritus
More on this doc ....

Tuesday, September 20, 2011

Prednisone, inflammation and fatigue, oh my

I've been taking prednisone for the past 5 days or so. A good dose - down to 35 mgs now. My body was so inflamed and my current (alternative) treatment wasn't working. Since I have lots of extra prednisone in my closet (there's a story to that) and it's staved off my polymyositis in the past, I decided to start taking it. Yes, yes, I know the side effects. And yes, I know I have to taper off. And yes, I know I shouldn't be self medicating. My fatigue was SO bad from inflammation I had to do something. Bad enough it put me out of work.

Friday, September 16, 2011

My Autoimmune Disease

A little about me and MCTD:
In the year 2000, I belonged to a gym and had a personal trainer. At one of the training sessions, I was doing squats while holding weights, and I almost threw up. I knew something was wrong. I remember that moment like it was yesterday. Is it possible that at that moment, my body had some kind of negative reaction to these squats I couldn't tolerate?  Gradually I grew very weak.

Saturday, September 10, 2011

Self sabotage, or just some bad habits? And some blabbering about aging of various species

I stay up way too late for someone with a chronic health disease. I also eat way too much at night.  It's a type of coping, but it's not really getting me anywhere.   I eat at night the way I used to smoke.    I no longer smoke! 3.5 years ... I still get cravings. BUT

Friday, September 9, 2011

Step away from the computer!

I just warmed up my dinner and I wanted to eat and finish making this blog look nice, but instead I will not.  I get very hyper-focused and have a difficult time walking away from "solvable things"  ... "I'll be back!!"
PS I love fonts.