APS and anxiety. Would like to hear from other's experiences.

[danap]

Hi all, I was just diagnosoed with APS last week, after a year of going through hell. My symptoms were continually misdiagnosed as anxiety (tremors, brain fog, troubled eyesight, racing pulse, hyperventilation etc.). I've just had a MRI scan today and waiting for the results. Has anyone else suffered similar symptoms? Will they clear once I've started on the medication? Thanks and its the greatest feeling just to know that it has a name and that people are willing to share their experiences and to help 'novices' like me.

[MaryF Administrator]

Hi, welcome, I am pleased that the diagnosis is flowing for you, as that is half the battle. You will need to do some real team work with your rheumatologist or haematologist to get your best outcome. All of us on here are different, in terms of the mix of medications we are on, decided by which ever medical consultants we have, however in a lot of cases there people can also have thyroid and adrenal problems.

So many medications may be needed or just one. You will have to settle

into what they suggest in terms of anticoagulation or Asprin, also for fatigue some also have Plaquenil added in to help with the extreme tiredness etc. Please thoroughly acquaint yourself with all the information on the charity website, which has all the APS specialists for the UK, if not in the UK please let us know. Also on the website, lots of information regarding blood tests, symptoms etc. hughes-syndrome.org/

Come back to us at some point with your full diagnosis and what has been suggested, as there is bound to be somebody on here with a similar profile which of course can be helpful. Plus many on here will have been through the fine tuning of medications that goes along with the diagnosis.

MaryF

[danap]

Thanks! I've already started reading the materials, as soon as the haematologist (known now as 'the saviour') came back with the diagnosis, and I was really impressed with the website. In fact, realizing just how many people suffer from it was a shock but also a ray of light and hope. I'm based in Israel but medicines are similar, so will definitely appreciate help at the late stages. Dana

[MaryF Administrator in reply to danap]

This doctor writes widely about the condition: panlar2014.org/ENG/descarga...

MaryF

[Lure2]

Hi Danap and welcome to this "APS-site". Stay on it because you will meet friendly people. They also have APS and the knowledgement of what can happen on the way to a better life with APS.

Then you will have some drug that may help you with this illness. Some of us do not have any diagnose for several years and a lot of damage then happens in our body.

There are some really good books when you are "new": "Sticky Blood Explained" by Kay Thackray is one. I read that one myself and understood that I had exactly the same symtom as the author. When I then started warfarin 3 years ago most of my neurological symptoms disappeared. That was what happened to me but we are all different.You will learn

.Yes I had some of your symtoms and most of us have been met by misunderstanding from different doctors. There are few doctors that understand this illness.

Best wishes from Kerstin in Stockholm

[loretta1106 in reply to Lure2]

Thanks. I am definitely getting this book!

[Manofmendip]

Hi Danap and welcome

I think many of our members will resonate with respect to your symptoms and, correctly managed, hopefully you will find that you will start to feel better.

Best wishes.

Dave

[Salty]

Hi Dana, with the nature of the symptoms you are having you could have pots, ie postural orthostatic tachycardia syndrome which has recently been described in association with APS. You can PM about this if you like.

[danap]

Thank you for your replies. It feels so great just to know that there are people who can understand what I'm going through and offer advise. I live in Israel and although the medical side is excellent, there's no local support group.

[london-lass]

Count me in on the anxiety thing!

I was never like this before APS!

[loretta1106]

I was just diagnosed in March and am just beginning to calm down and accept my dx. It's definitely anxiety producing not knowing what's wrong, how it affects us and what future holds. Finding good doctors, getting on helpful meds and having support here has help my anxiety a lot.

[Lure2 in reply to loretta1106]

Hi Loretta, I am so glad to hear that.

Hugs to you from Kerstin

[loretta1106 in reply to Lure2]

Hugs back Kerstin. Have a great day.

[GinaD]

Hi, yes I too was deemed a " anxious" patient by doctore who dismissed my symptoms until an MRI revealed a lot of TIA/mini stroke damage. What I had called" panic attacks" had been, in reality, mini strokes.

Mine was a convoluted path ( as was the case with many autoimmune patients, ) involving missing blood work, lies, an intervention by old high school now doctor friends, and a trip to a neighboring state to a hematologist.

After I went on warfarin my panic attacks stopped and subsequent MRis showed that all but 2spots in my brain cleared up: a hole in my visual cortex means I can't read quickly with bifocals, so I have seperate reading glasses. Also something about my nasal cognition is screwed up and I smell things that aren't there and sometimes can't smell things that are.

So for me, diagnosis was a good 90% of the battle since I took to warfarin like a cold hand to a dryer-warmed mitten.

Good luck, and welcome! Let us know how things go.

Gina

[Hidden in reply to GinaD]

Hi Gina,

How did you go about evaluating your visual problems? I also have great difficulty reading, and I worked as a lawyer before I became sick. I have seen a neuro-optometrist and have reading glasses with prisms but they don't solve most of my problems...will continue to seek information.

How did you get help reading?

Thanks!

[GinaD in reply to Hidden]

I had a visual field test, which revealed a hole whose position indicated a brain problem not an eye problem.

Gina

[Lure2 in reply to Hidden]

Hi, I have written an answer to you about how to read again. Down you go this "page" Kerstin

[danap]

Thank you, Gina and Loretta. I'm waiting for the MRI scan results and can't wait to start the treatment.

[Lure2]

Yes I agree with Gina. It is not an eye-problem but a brain-problem.

.

I had, I call it, a "chaleidioscope" seeing. It came more and more often. I was at that time only on baby-Aspirin.(Trombyl in Sweden)

Sometimes I could not see on my right eye (always the right eye). Half of my eye was grey (the lower half ) It could take about 3 - 5 minutes before it cleared up.

When my trouble with seeing began I had a little pain when mowing my eyes from side to side From the beginning I also had Auras and they came more often later on..

Not until I started warfarin the eyesymptoms disappeared . When I started warfarin everything in the room was more clear and when I read I could see clear. Since then I have been able to read and like now write on ´my computer.

I have been told that was microclots or miniembolies. Some of us have these microclots.

Sorry. This should be an answer to Gardenia2 about help to read.

Best wishes from Kerstin