Strange Blood Work continues to baffle my group of doctors

[allycakestexas]

In April of this year I was diagnosed with a mass near my aortic pulomary window with what they thought was a lymphnode and subsequent Lymphoma.  Since I live near Houston I had the opportunity to be followed at MD Anderson over a 6 month period to watch and keep an eye on the mass in my chest.  MD Anderson at first said they thought it was due to my thymus, but my last round of testing 6 months later brought good news.  There was no visible mass on the CT and my thymus actually shrank a bit.

Over the summer I had fevers in the evenings (up to 102.8), itching, and extreme tiredness, chest pains and a red mylar rash on my face.  At that point my blood work was a bit off but nothing telling of what exactly the reason could be.  The fevers have subsided for the most part, the itching is better, but the extreme tiredness, fatigue and muscle pains, chest pains and maylar rash continue.

My recent blood work over the past few months continues to worsen despite efforts by my team of doctors.  

Albumin level continues to drop and is at 2.7 at the moment
C-Reactive Protein is very high
Sed rate is moderately elevated
Glucose is low and sometimes as low as 54 on a non fasting blood draw
Cardiolypid antibody is elevated (sorry for the spelling)

They ran a 24 hour urine, and there was some protein but not a lot.  There was some creatnine clerance in the 24 hour urine.  

My doctors are totally stumped.  

[thyroidian]

You are more than welcome. What planet is your rheumy on, you dont have raised anticardiolipin antibodies, in fibromyalgia.
You fit the criteria also for Antiphospolipid Syndrome-Hughes Syndrome.
especially with the multiple miscarriages, also APS,-Hughes syndrome mimics MS.
So if you have been looked into having MS, then it is a big possibility that this is APS-Hughes.

You are right the problem is right in front off there face, just like it was right in front off my face.
The answer is in the bloodtests,
If the rheumy isnt going to retest the anticardiolipin, and wants to stick with fibromyalgia, which this is definately not, then i suggest to you that you get a copy off your blood results, and move on to a better knowledgeable rheumy, as soon as,
Infact i would be running a mile from the one who is suggesting fibromyalgia, because she hasnt got a clue.

Also there is a good website to go on called The Hughes Syndrome Foundation.
This will give you all the information you need to know, on all tests which need to be done, treatment, and symptoms, etc,,,,,,,,,
This forum is run by the man who found this illness in 1983, and they are the best doctors around when it comes to Hughes- APS.

Maybe you can download some info, and take it along to your own internal doctor, to get further testing, as you will definately fit the criteria, along with the positive blood test for anticardiolipin.

Hope this has helped, im here if you need anymore info.
Like they say knowledge is power, this is your life they are playing with.
Good luck. im wishing you well.
Nicola... PS.... I am a Hughes Sufferer.

[allycakestexas]

Thank you so much for your answer!  You are a saving grace.  I feel like my doctors are so ill educated except my Internal Medicine doctor.  I see a rheumatologist and I just got off the phone with her and despite all my blood work, she says well ya know its still probably maybe fibromyalgia!  (Uggggghhhhhh)  People with Fibro dont have bad blood work people, its a known fact!!  I have ever symptom of both of those things.  I have multiple miscarriages, problems with pregnancy, ectopic pregnancy, a suspected Pulmonary Embolism, and the list goes on.  I have been looked into for MS twice in 8 years.  These people are ridiculous the answer is right in front of their face.  I am bringing up Hughes to my Internal Medicine doctor next week when I see her!

[thyroidian]

Your doctors are stumped..........der what planet are they on.
First you are showing levels of inflammation in the blood.
Then you have cardiolipin antibodies which are elevated, which means positive.

I would suggest having a ANA, Anti-DNA,
I also would like to ask what do they intend doing for the positive anticardiolipin.
This is a test for APS-Hughes Syndrome.

You should be tested in 8-12 weeks time, and if they are positive then, then you need a referral to a good rheumy, or sometimes they send you to a heamatologist.
This is called sticky blood, APS, -Hughes Syndrome.
This condition, can be seen primary or secondary, usually to another auto-immune disease, like Lupus, or Sjorgens.
Have you got the numbers of the anticardiolipin? and is it the IGg or IGm?

If you can get the numbers post them, for the anticardiolipin.
I would also be looking into Lupus, also, so i would ask for some further testing.

Hope this has helped, and if you need anymore help, im here.
Good luck,
Nicola