Antiphospholipid Syndrome (APS)

Good Morning!!

I'm not feeling very well today.  I believe that mostly it's the heat that has brought on this flare of sorts.  We have been having record breaking temps of over 100 degrees.  Aside from my usual flare symptoms, I've developed extremely bothersome rashes underneath my breasts.  Therefore, I am going to stay indoors until this heat breaks.  Thank God for my son who will be driving my daughter to Anderson today for her training.  Thank you Sweetheart!

I want to talk a little bit about Hughes Syndrome.  Otherwise called Antiphisiploid Syndrome.  You can read about it at http://www.hughes-syndrome.org/.

Way before we even knew I had Lupus or RA I had fibromylagia.  Then I started to experience very strange neurological symptoms.  It was hard for me to explain these symptoms to my doctors.  They were sort of like facial tingling but only on the left side of my face.  What would happen is I would begin to feel pulling above my left cheek and this pulling would travel down the left side of my body.

Once I could put this into words my rheumi at the time asked me to remove my shirt and she examined my arms and breasts.  What she saw there looked like a webbing of sorts underneath my skin.  I never thought anything of this as it has been there most of my life as far as I can remember.  She asked me a million questions.  Questions about my pregnancies especially.  Both of which had been riddled with complications.  She ordered blood tests for what she called Antiphisiploid Syndrome.  This doctor explained what APS was and she was sure that I had it.  Sure enough the blood tests came back positive for APS and the Lupus Anticoagulant (which is not Lupus).  Monthly blood tests continue to confirm this dx.

I was put on a baby aspirin a day but my symptoms continued. I was put on Plavix but still I experienced symptoms.  Then I took both aspirin and Plavix.  My symptoms lessened but did not disappear entirely.

Otherwise I felt fine.  My fibro was pretty much under control and aside from these other symptoms which occurred only periodically I went through my life feeling fine.

I need to add at this point that during that period of time in my life, I was the perfect weight.  Ate a high fiber, low fat diet.  Drank at least 8 glasses of water daily.   I didn't exercise regularly, but was very active and walked a lot.

One day (it was May 13, 2003, I remember that day because it was the day before my 45th birthday) on my way to work I started to feel these symptoms again.  This time they were very pronounced.  I was driving and almost at work so I continued on my way to work.  In the elevator on my way to my office my coworker told me that I looked horrible and very pale.  I worked at a nursing home and had to pass the nurse's station on the way to my office.  One nurse, Pat, noticed me and sat me down.  By that point I could hardly speak and was very confused.  What happened after that is somewhat of a blur.  All I know is that I was later told that my blood pressure was something like 210/170.  911 was called and I was rushed to the ER.  Thankfully, my supervisor (the administrator of the nursing home) knew the administrator of the local hospital ER.  So he called ahead and explained my medical history of APS.  I was given TPA and some other IV things.  My condition stabilized and was admitted.

It was decided that I needed to be on Coumadin which is a blood thinner.  It is the prescribed treatment for APS.  But until my INR  (International Normalized Ratio ~ the level of anticoagulant/blood thinner in a person's blood) became therapeutic I remained in the hospital on a heparin IV.  I think I was in the hospital for a week maybe less.  It was agreed that I had a stroke.

Thankfully I was not left with any serious deficits.  Minor left sided weakness and a seizure disorder which they are still not sure was caused by the stroke or the APS.

To this day whenever my INR goes too low I start to experience those symptoms. For the last five years I have had my INR levels monitored regularly.  I even have a monitoring device here at home.  http://protimetest.com/  It's done with a simple finger prick.  I get my INR and PTT levels.  But after all this time I know before hand just by the way I am feeling if my levels are too low or too high.  Both of which are not good.  With a low INR I am at risk for throwing a clot.  An INR that is too high can cause internal bleeding. When this happens I have a headache and bruise easily.  My gums will bleed when I brush my teeth.

APS has been misdiagnosed as MS.  Here is a portion of the above mentioned web site:

Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.

The main symptoms of Hughes Syndrome can include any of the following:

Headache or migraine	Giddiness
Memory loss	Visual disturbance
Skin disorders	Thrombosis - DVTs
Heart attack	Stroke
Pulmonary embollism	Multiple Sclerosis-like features
Gastrointestinal disorders	Pregnancy problems

Only until recently (maybe a year) has my INR levels remained therapeutic.  Diet and other medications can cause a person's INR (while they are taking blood thinners {not Plavix}) to become unstable.  Eating too many leafy green veggies (Vitamin K veggies) like spinach lower your INR.  Taking aspirin or Ibuprofen.

Because I later developed Lupus and RA and had to be on more medications my INR levels were very unstable for quite some time.

Now that we have moved and have yet to fine a doctor to take me as a patient, I have been self testing.  I got the name of a doctor in the area who may be accepting new patients as well as a local Anticoagulation Center from my next door neighbor.  She is also the apartment complex manager.  I plan on calling them later on today.

In the Hughes Foundation web site it says that once INR levels are therapeutic symptoms disappear.  I believe this to be true.  I was also told that the cognitive dysfunction will not repair itself.  But I am on Memantine (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a604006.html) and it has helped to avert any further damage to my brain cells.  My brain is full of lesions.

I was still convinced that I also had MS.  And, after many conversations with my neurologist it was agreed that I needed further testing.  My MRIs showed the lesions but she ordered a SPECT scan ( http://www.precisionradiotherapy.com/PE-SPECT.htm) which showed cerebral vasculitis but no MS.

It's important that anyone with any of these symptoms be tested.  Especially if you have livedo reticularis.  Here is a picture of it.

Read through the Hughes Syndrome web site.  Or do a search for antiphospholipid syndrome (APS).  It was very helpful for me.

Tags: Antiphospholipid Syndrome, Hughes Syndrome, Hughes Foundation, Coumadin, INR, Anticoagulation, Atypical MS Symptoms