Stroke and APS

[Hubbsy]

I've been diagnosed with APS in 1997, only after I had a DVT in my calf which then caused a pulmonary embolism. The specialists suggested I increase my INRs to >3.0.

Recently (2012) I had some dental surgery and the surgeon wanted me off coumadin. I consulted my family doctor, and actually requested a heparin bridge, however my doctor said no and the risk is minimal. I went off coumadin for 4-days and the day after the surgery I started my normal dose (7.5 mg / day) My INR after the surgery was <0.5.

During the next week I started experiencing massive headaches, numbness in my finger tips and my lips. I went to my doctor and he indicated the numbness on my finger tips was carpal tunnel and I had a infective due to the dental surgery and prescribed me antibiotics. The following week I had a stroke. Has any one else experienced recurrent thrombosis when the INR was extremely low? Also I've been researching extensively on the impact of stroke versus APS and the connection to arterial thrombosis. Neurologists do not feel my stroke was caused by low INRs due to dental surgery, however hematologists feel there is a significant correlation between stroke, APS and low INRs. I was wondering if anyone has recent publications supporting stroke, APS and low INRs?

[Manofmendip]

Hello and welcome to our friendly forum.

I am sorry to hear what has happened to you and that these incidents seem to be caused by the intransigence of your doctors in protecting you during your dental surgery.

I will ask my colleague APsnotFab if she can provide you with the information that you request, as she has a lot of information of matters relating to APS.

Many of our members, me included, have had experiences of Neurologists being in denial about APS.

Dave

[Hubbsy in reply to Manofmendip]

Any information would be helpful.

Thanks,

Hubbsy

[HollyHeski Administrator]

Oh I'm so sorry you have had a stroke, you were completely right to request a bridging plan, I cant believe your doctor didn't give you this!!

You have been diagnosed with having APS so the coumadin is for life as we have thick, clotting sticky blood, when you came off your coumadin your bloods immediately clotted, hence your headaches and numbness and especially your stroke.

I get numbness and tingling in my lips when my blood is too thick and many on here get the headaches/migraines.

I am afraid over the years I have lost faith with neurologists and can't put into words how I feel!

I am sure Apsnotfab will say a few words regarding this and will give you lots of documentation to support you.

[Lure2]

Hi and welcome to our site for HS/APS!

It was in 2012 you had a stroke because your familydoctor had not knowledge of our illness and that we can never stop anticoagulation. He also thought your symptoms were from carpal tunnel syndrome.

I can say that we recognize these things here as so many of us have had ignorant and not knowledgable GPs. Some of us still have as there is very few Doctors that know of this autoimmun illness that can affect every organ in our body if we are not properly anticoagulated at a steady and high INR around 3-5 - 4.0 or even a bit higher.

I have had several Neurologists and we have found here on our site after several years that that type of Doctor does not "get" was APS is about - too thick blood that has to be properly thinned!

I have had micro-embolies and as soon as I am too low in INR I get symptoms back ( I selftest since 5 years and my INR must be around 4.0).

I now hope you have found a Specialist in Canada that is specialized in autoimmun illnesses. If not you need that Doctor!

Are you on Warfarin at present? I hope you stay with us here as you are on the perfect place to get info from our members. We care for eachother here as we know that other people do not understand how we feel and what is wrong with us.

Best wishes from Kerstin in Stockholm/Sweden

[Hubbsy in reply to Lure2]

Currently I'm on Warfarin with my INRs between 3 and 4.

[Hubbsy]

Thank-you so much for the recent publication on Cessation of oral anticoagulants in antiphospholipid syndrome. Very interesting reading. You also noted that the antibiotics my doctor prescribed me, prior to my stroke, even further enhanced the lowering of my INRs.

[Wittycjt]

Interesting reads APSnotfab.

Hubbsy: I have found most neurologists to be lll informed regarding our issues, I much prefer hematologist and or rheumatologist. Sad you had to go through this. It is much like my story. Again, I just wished they would be honest.. and say " I don't know how..."

have you had any long term effects from the stroke? Best of wishes to you!

[Hubbsy in reply to Wittycjt]

Yes I have had some long term effects. Firstly I get fatigued, even if when I'm doing physical work or mental. The stroke affected my speech and I had to learn to speak again. When I'm tired my words don't make sense so I don't talk. When I'm writing a letter or an e-mail I always miss 3-letter words, thank god I have spell check. Secondly, the stroke also effected my cognitive ability specifically organizing and planing. My career has also been effected, I had to relinquish my position of Director of R&D.

The stroke had a profound impact specifically the anger that I experienced. I went to anger management classes however ultimately I required Fluoxetine (prozac).

Hubbsy

[Wittycjt]

We are quite parallel, read my bio! Don't stop talking or your speech can not progress as it should, do u have a speech therapist?

[ndstephens49]

In 2009 an idiot cardiologist/pacemaker doctor stopped my Coumadin and refused bridge with lovenox. He scared me by saying I needed emergency pacemaker implantation due to heart stopping. I was an idiot for listening to him. 11days later I had a clot and maybe also vasculitis issue in my foot. It took 6 months to heal. I ended up with MRSA in foot also and on 6 weeks IV vancomycin.

You live and learn, but not without consequences. I'll never let someone stop anti coagulation again.

Nancy in West Virginia

[Hubbsy in reply to ndstephens49]

I here you brother!