Finally seeing a neurologist!!

[Tomcat]

After what seems like a life time I’ve finally received a date to see a neurologist about my memory problems!! Also tomorrow my doc is starting me on Warfarin (not sure why as I’ve never had a clot but hey ho) been on aspirin for 20+ years then a new specialist I was seeing switched me onto Apixaban which was widely agreed as a bad move.

[TwoH]

It’s amazing how wonderful it feels when you see progress which is what getting a Dr like this is. I’m only a year into this particular battle but the accomplishment of getting an appointment is huge as is getting treatment! Yay for you!!

[MaryF Administrator]

Hi, do let us know how that goes, I hope your Neurologist understands a Hughes Syndrome/APS diagnosis, as some really do not get it! MaryF

[Tomcat in reply to MaryF]

Thanks Mary, will do

[HollyHeski Administrator]

It's great you have a date, hopefully they have knowledge of Hughes/APS?

Hopefully the warfarin will help too.

Let us know how you get on?

[Ozchick]

I was convincing myself that I had Alzeimer's disease but ended up with a diagnosis of Epilepsy. (Petit Mal or Absence seizures) the Neuro I'm seeing now is great and does have good knowledge of APS. (I had my first 2 witnessed seizures in Hospital) but all my other memory problems were probably a precursor to this diagnosis. Took a while for the meds to kick in but my husband is no longer frustrated with me for not finishing sentences and forgetting words etc. He tells me I'm 'nearly' normal again-if there is such a thing BTW- not saying you have this but always worth checking for peace of mind!

[LindaMorrell]

Good luck with the warfarin. It’s a tricky one but will probably save your life and hopefully your memory

[Lure2]

Hi Tomcat.

So you did not find any Specialist for your APS as we talked about 2 years ago when you had neurolgical symptoms.

This Doctor you talk about who changed you to Warfarin before taking Apixaban could perhaps be knowledable of APS.

Warfarin is better for us. Probably a good descision. What INR did he suggest for you?

Did he recommend that youd should see a Neurolgist? I think you told us before that you did not have dementia.

Most neurological symptoms are relatad to INR and too thick blood and a Neurologist usually do not understand we have that issues with our thick blood that gives us these many problems. The most important thing for us with this illness is to have a Specialist of autoimmun illnesses who works with people with these illnesses incl Antiphospholipidsyndrome at a daily basis.

I am triple-positive with high titres and they have never seen a clot on me either. We usually have micro-clots and they are very difficult sometimes to find on a Scan of today.

[Tomcat in reply to Lure2]

I’ve had myself referred to the Royal Liverpool Hospital as my own was to put it bluntly bloody awful (pardon the pun). Suggested an INR of 2-3, waiting to see a neurologist in January so hopefully that will give me some more info

[GinaD]

But not all neurologists are baffled by APS symptoms. It was a local neurologist who I saw on an emergency basis after one of my TIAs who suspected APS and made the phone call which lead to my referral to a hematologist in Cincinnati Ohio, which lead to my diagnosis.

[Lure2 in reply to GinaD]

Hi Gina,

Yes I also had a good chief-Neurologist who found that my Amaurosis Fugax (eye-issues) should be treated with Warfarin which I did not like but finally agreed on.

But the Neurologist we see, must be knowledable of what APS is! Perhaps you had luck and that she knew about APS.