MS vs. APS

[jrterriers]

I've been reading about antiphospholipid syndrome (APS) and how some folks with APS are incorrectly diagnosed with MS.

My question is: is it possible/common for a person to have BOTH MS and APS? The literature is confusing to my little brain.

I'm also wondering whether any folks on the board have been misdiagnosed with MS when they actually had APS, or vice versa.

[jensequitur]

Welcome to the forum!  You've found an old post about anti-phospholipase syndrome and multiple sclerosis.  If you would, please repost as a new question, using the green button on the front page of this website.  When you do, I'll put in my input - I have MS, and I've had a blood clot.  I'm being tested for APS.

[Dunaway02]

Is there any correlation of becoming extremely ill on the first day of or day before onset of the menstrual cycle to Hughs Syndrome or Multiple Sclerosis?  

My daughter had a blood clot in her brain 4 years ago which was reversed by Lovenox and Heparin; this was just hours prior to her cycle beginning. She has since been diagnosed with MS, even though her labs clearly reflected antiphospholipin syndrome.  Without fail, she is always beginning her cycle whenever she has an MS episode or exaserbation, with slurred speech, impaired movement (cannot walk), fggy thinking, and vision problems.

Any input is appreciated!

Today, she is back in the hospital with an MS episode, being treated with steroid infusion along wtih Lovenox. I don't understand the use of Lovenox in an MS patient.  Is there something I'm missing?  

[sllowe]

Hi there,

YOu happened upon an old, but important post! You have one of the great MS mimics, Hughes or APS, the one that I had to force my docs to look for.

I understand it does take some time to dx this sometimes because it doesn't always show with initial testing. Re-testing is needed, etc.

Will you do us a favor? Will you copy your post here and re-post it using the green "post a question" on the front page of the site? Very glad to have you here, Ju and would love for you to have the opportunity to meet the lot of us. You have a lot to offer with what you've been through. I thought for sure I had this too but was dx'd w/MS in the end.

See you around soon,
-Shell

[jue753]

I was told when I was 28 just after the birth of #3 child that the issues I was ahving, migraines dizziness, numbness and balance were MS. I had a few 'episodes' over the years, one where I couldnt walk or talk properly for over 3 months, all the time under the impression I had MS.
10 years later I went into hospital for a thyroidectomy (again) and had my blood work ups done, to find I had a hufge blood clot in my jugular vein (near the bracheal artery - spelled wrong). Ater a few more test they found AcL antibodies and did the repeat test...I have Hughes Syndrome or APS. I was surprised at the fact that a few pills a day can make you feel so much better. Although there are a lot of tiems when I can feel it 'coming on', get numb patches, the confusion and the not being able to talk straight or find the words when having a conversation.

My insurance unfortunately does not cover me having my bloods done every month or even every other month...it doesnt cover it at all...i havent had my INR done in almost 2 years, but you can kinda tell when its off, u can just feel it, and try to adjust a little accordingly, I have been dealing with APS now for 6 years, all the debilatating migraines, and the funny looks when people think you are drunk...the last few days I ahve been getting numbness coming and going up and down my left side, in patches, sometimes can walk right, sometimes have major problems typing, which i am today :)...refuse to go the drs office too often as they always find something else wrong...and my list is long enough thankyou :)

Anyone wnat to talk about it you are sure welcome to message me

[jrterriers]

It's amazing what some docs don't know or want to admit might be possible, isn't it?

[Quixotic1]

My  1st "evil" neuro did run it automatically.  His workup of me was very complete, though not very timely.  That's why I blame him so much for dismissing the abnormalities and talking me out of the LP.  He knew better, but still let his prejudice that nothing was wrong with me color his assessment.

Quix

[Quixotic1]

You make a good point and one that researchers in Hughes Syndrome have made.  All people with MS should be tested, because there have been many misdiagnoses made of MS that was actually APS or Hughes Syndrome.

Quix

[6-paq]

I'm glad your PCP ordered the test just to "rule out" this mimic.  

I was tested for it.  My neuro didn't automatically order the test.  I saw a Rheumatologist and she ran it (which was normal).

Take care, Pat :)

[jrterriers]

Thanks for the answers/insights/info.

I agree that the APS testing should be automatic for people with a probable or even definite MS diagnosis. Although I am 18 years into an MS diagnosis, my primary-care doctor has at my request ordered an APS test.

Thanks again for the answers, and I will keep you posted.

Tammy

[Quixotic1]

Hi, I'm sorry we didn't get to your question until today.

From my reading testing for the more common antibodies involved in AntiPhospholipid Syndrome should be automatically included as part of the mimic rule out.  

I can think of no reason that a person couldn't be unlucky enough to have both. The diagnosis would be tricky, I think.  I suspect that a large number O-Bands in the CSF would point to the co-existence of MS.  We do know that many people with MS do have other autoimmune diseases.  The studies are conflicting on whether people with MS are more prone than the general population to have another autoimmune disease.  Mostly they say we are not.  But, when we do, there are specific diseases that we do have a higher risk for.  These include:

Autoimmune thyroid disease (like Graves and Hashimotos),
Type I Diabetes,
Sjogren's Syndrome (this data is a little confusing because of the difficulty sometimes in
       distinguishing the two if the Sjogrens is ANA negative)
Inflammatory Bowel Disease

Quix

[sllowe]

Hi there,

Bumping this up for you.  As I'm sure you are aware, APS is another MS mimic.  I'm not sure about having both.

Has your Doctor done a workup on you for mimics?

It's been my experience (which isn't vast) that unless they thought you had a stroke, the docs wouldn't typically run the aCL's and the aPL's.  They should, but not all do.

Hope you are well, maybe some others will have info on dx's with both...

-SL