New to this syndrome and trying to learn

[Cjmsm331]

Quick question...

I am a 36 yr old white female and mother of 2. I have temporal lobe epilepsy, RH negative blood and was recently diagnosed with APS. Anyone else in this boat?

[daisyd]

Yes I have epilepsy,I think caused by APS I have 2 grown up children one who is now 39 born 1lb 14oz and has children of his own and a daughter who we adopted, my local neurologist could have diagnosed me with APS if he believed it existed, my epilepsy is controlled with Lamotrigine

I take Warfarin for APS inr range 3-4

[Cjmsm331 in reply to daisyd]

Thank you. The more I learn about APS the more I am wondering if my epilepsy was also caused by the APS. I was on 700mg of Dilantin but chose to stop taking it. I have had 6 miscarriages and 2 live births. So many random and unexplainable medical issues have popped up over the past 4 yrs and I'm starting to wonder if they could all some how be related.

Extreme pain and fatigue

Heart palpitations

My vision is changing to a point where I can hardly see

Every yr I get extremely sick to point that I have had to be hospitalized

Unexplainable bruises

Loss of breath for the smallest of things

Horrible memory loss

The list goes on n on.

It seems to me that not many doctors have had personal experience treating this so I'm reaching for answers.

[GinaD]

Hopefully your diagnosis will open larger diagnosis doors. I too have temporal lobe seizure disorder, though I have not had a seizure since I started warfarin in 2000. The most important medical ingredient for all of us is: MAKE SURE YOU ARE TREATED BY A DOCTOR WHO IS EXPERIENCED IN TREATING APS! You see, since the circulatory system goes everywhere, clots can form anywhere, producing symptoms that can confuse many doctors. After all --who would think that an only recently recognized blood disorder could result in neurological, orthopedic, hormonal, or gastro-intestinal symptoms? (And sometimes all plus more in some patients?) Only docs knowledgable about APS, that's who.

[Lure2 in reply to GinaD]

Well said!

[Cjmsm331 in reply to GinaD]

Thank you

[Lure2]

As Gina says it is vital to have a Specialist of APS who works with people with this rare illnes.

As APsnotFab says temperal lobe epilepsy needs a high INR.

I wonder what therapeutic level of INR are you on today if you use Warfarin for your APS? I guess you must be anticoagulated.

I have had a lot of neurolgical symptoms (before Warfarin-treatment) and I am triplepositive with high titres and live in Sweden and selftest. I need to have an INR around 4.0 to be without neurolgical symptoms.

Read as much as you can about APS . This autoimmun illness may very often go hand in hand with other autoimmun illnesses, like Sjögrens and RA and SLE. Even Thyroid-issues. That is why it is so important you get to a Specialist of autoimmun illnesses who works with people like us and can distinguish between these illnesses which can be very difficult sometimes.

A Rheumatologist, Hematologist or a Cardiolog we often need. The Neurolgists do not always understand, that the problem with us, is our too sticky blood and that we has to be thinned in a stable and proper way.

About your vision; go see an Ophtalmologist (special eye-doctor). I sometimes lost my vision in one eye. Also saw double.

Also see to it that you do not go with too high bloodpressure ( your loss of breath). Why I say this is because I today have Pulmonary Hypertension and 2 leaking heart valves. All that started with exstremely high bloodpressure which is a rare symptom of APS. This was before I was properly anticoagulated with an INR of 4.

Why are you every year hospitalised? You are only 36 years old.

[veganworld]

Hi

I found a lot of info and comfort from reading Kay Thackeray's book. I think it is called sticky blood explained. Available on Amazon. I lent it out to people in my family and one of them found they also had APS and it explained her health issues. It covers all the things we may suffer from which are many and varied. I think it is a good read for you.

Best wishes

Kaz

[Cjmsm331 in reply to veganworld]

Thank you

[Lure2 in reply to Cjmsm331]

Please answer our questions back to you as that way you will get an answer and possible explination for your symptoms. As APsnotFab asks; are you anticoagulated as that is very important having APS.

Also read my answer to you especially about an Ophthalmologist and very high bloodpressure.

[KellyInTexas Administrator]

Hello there,

I also have temporal lobe epilepsy. Partial complex.

I was diagnosed with this first, ( 2012) then 4 years later with APS. ( 2016)

I was started on lomotrogine but had a Stevens Johnson’s reaction at higher titrations- ( never made it to steady state) so was switched to Dilantin. I did have break through seizures, so was switched to Vimpat, which is targeted for temporal lobe epilepsy.

Still had problems, plus developed cluster migraines and was switched to Topirimate. ( 300 mg split dose.) then the APS was discovered due to progressive and specific symptoms / antibodies being positive 12 weeks apart plus a simultaneous DVT.

Warfarin, ( LMWH when INR is too low) plus anti convulsants every 12 hours has resulted in clear EEG’s.

[Wittycjt]

What meds do they have you taking since diagnosis?