for those of you with APS. I have a questions!

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/18/2009 8:24 PM (GMT -7)   
Couple of quick questions. Is anticoagulation (coumadin, heparin) the only treatment for APS? Does anyone have ongoing neurological problems like myoclonic jerking, speech problems, vision issues, nausea, crazy headaches, etc, while being properly anticoagulated? Do the symptoms go away if the INR is higher?

Thanks!

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/21/2009 9:26 AM (GMT -7)   
Ginny,
   I have never heard of another treatment for APS.  I'm wondering if those symptoms aren't "purely" neurological and not related to APS.  I had those exact symptoms when I had brain inflammation.  Are you having trouble Ginny?  You have been on my mind lately.  Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/21/2009 1:27 PM (GMT -7)   
Hi Judy, yeah, I'm having a lot of problems. We're not sure they're Lupus though. My symptoms are classic MS. I had the optic neuritis and everything. I get my MRI results from my neurologist tomorrow afternoon. The complicated thing is that MS and APS have near identical symptoms. Even the brain lesions can look the same. A spinal tap can help determine if there are specific MS markers. I haven't had a spinal tap yet. I definitely DO have APS and I'm already anticoagulated and still having all these symptoms. I'm just curious to know if there is anything else for treatement besides blood thinners?

So the diagnosis is still up in the air. I'll know a lot more tomorrow. Thank you for praying for me!!

How are you doing?

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/21/2009 2:34 PM (GMT -7)   
Ginny,
I'm good. So worried about you. I also had the optic neuritis with the brain inflammation. I'm glad they are thinking outside of the (lupus) box, but i'm praying so hard this is lupus and not yet another diagnosis for you. Please keep me posted! If a spinal tap is indicated, don't stress it's really not that bad at all. That was the key to diagnosing the cerebritis for me.

Keep the faith. Please know I am sending up prayers for you right now! Keep me posted!!
God bless you, Judy

countryboy
New Member


Date Joined Jun 2009
Total Posts : 18
   Posted 12/21/2009 8:25 PM (GMT -7)   
I have a different suggestion you might check out. My wife has systemic lupus but also has SREAT (steroid responsive encephalopathy with autoimmune thyroiditis)
This an extremely rare disease that is found by a high TPO-ab (thyroid peroxidase antibody).
The thing is that there seem to be a lot of SREAT sufferes that also have cns-lupus.
The symptoms you are listing match exactly, including the optic-neuritis like symptoms. I suspect though that they are caused by pressure on the optic nerve from the outside in, instead of the inside out.

The thing is that there are some neurologist and rheumatologists that think they are both the same diseases.
By the way the treatments are nearly identical.

You might ask for a TPO-ab blood test. They are very inexpensive.

At any rate my wife is struggling with the exact symptoms right now.
In fact I think she might have to start a solumedrol cycle tomorrow as her eyes are starting to not tract and hurt.

I am sorry that you are having so many problems right now

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/21/2009 10:00 PM (GMT -7)   
Hey Judy. I can always count on you for prayers! LOL. thanks hon. I'll definitely keep you posted and thanks for the encouraging words regarding the spinal tap. The idea makes me shudder!

Countryboy, thank you! I had no idea this SREAT condition existed. I'm going to do some research on it right now! Out of curiosity, does your wife have a really stiff, sore neck all the time? I mean REALLY stiff and sore? I've been dealing with this for about a year now with no resolve. Nothing works....

My opthamologist did confirm the retrobulbar neuritis today. He told me to watch my vision and pain because the neuritis can come back about 2 months after a solumedrol treatment. They only last about that long he said. I hope your wife gets some much needed relief from a treatment. Would probably help her other symptoms too.

I've never had an issue with my thryroid. Does SREAT cause it to be hypo or hyper?

This is all so very interesting. Thank you and I'll keep you posted. I want to know how your wife doing too!

Blessings,
Ginny

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 12/22/2009 9:34 AM (GMT -7)   
Ginny, praying all goes well today at the doctor's. Please give us an update when you're up to it! hugs and love to you
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 12/29/2009 10:46 AM (GMT -7)   

Hi! Everyone,

I was diagnosed with APS when it was called anticardiolipin antibody syndrome in the early 90's, and my 5 8 wk miscarriages were blamed on it. I only take 81 mg. of aspirin daily for it's anti-platelet/anticoagulant effect. I gave myself heparin injections in my abdomen trying to save one of my babies. Some days my neuro symptoms mimic a stroke, and it is scarey for sure. I wrote my Advanced Directive for my family when my left side went numb.

hugs,

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

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