Possible MS - now lupus anticoagulant

[wiggles94]

Hi all.  I haven't been on in a while - but many of you may remember me as a "gray" area paitent - possible MS -

Just wanted to give an update and see if any have experienced my  new dx??

A little background:

Have lesions - sx - was on rebif for a year, second opinion wasn't so sure MS - so off rebif - and in a holding pattern for three years - many tests, docs etc ....great neuro now at U of Rochester who still says possible MS.

Good news is no new lesions on MRI in 3 years - bad news - sx continue -

Just discovered I tested positive for lupus anticoagulant - which means autoimmune disease that attacks proteins in the blood that prevents clotting - so if you have this - at risk for strokes - could explain lesions in brain ...also known as "sticky blood" and antiphopholipids syndrome (aps).  

SO I have to be retested again in three months to see if it tests positive again- in the meantime I am on daily baby
aspirin -   I also have high ANA - that has been high everytime they have tested since this journey into the unknown began!

Anyway - this isn't lupus - but many with lupus test positive for lupus anticoagulant -
Thought this may be of interest to some - and also wondered if any who have MS also have this???

Hope all are well!  AND MS isn't hurting too badly, and gray area patients - are hanging in there with patience and a sense of humor -that makes the journey a bit less stressful - if you can muster up some laughter in the face of what at times seems like insanity....

[wiggles94]

Thanks for the info Michelle.  We'll see what the retest shows in 3 months.  Not sure if it's positive, if they will put me on blood thinner due to lesions in the brain - docs have wondered if the lesions could be cause by small vessel issues all along - OR do you need to have a major stroke to be put on the blood thinners?   Sorry for all your problems with this!

I did read that many are initially dx with ms, only to find out later that they have antiphospholipid  syndrome, but I also know that many have more than one autoimmune issue going on.  

Thanks and best to you!

[wiggles94]

Thanks Alex.  Seems like it's getting closer.

[michelleric]

I have the lupus anticoagulant, among many other "diagnosis" with the blood clotting issue. This was after I had 2 major blood clots, 1 very life threating after surgery, about 7 years ago. I have been on coumadin ever since, and will be for the rest of my life.

I am glad they found this before they were discovered it my way.

I didnt know this was an autoimmune issue.  I have many issues with my immune system, so I guess it makes sense.

I am diagnosed with MS, since 4/09.  I have never been told the two are related. I will ask my neuro next visit, just out of curiosity.

I hope you get some answers soon,

Michelle

[HVAC]

I hope you get a diagnosis soon.

Alex