In a "Flair"..

[happee1]

i seem to be in a "flair"..having trouble seeing..concentration and daily chores...hate to tell my doctor because he always sends me for mri..blood..cat scan etc tests and they always come back normal..it is expensive and puts more radiation into my body..i just wish it would clear up soon....more than anything my sight..i just can't focus that well..and my left eye is seeing darker than my right...had it before and it cleared up..it is a waiting game...sigh

[MaryF Administrator]

It is good that you have a careful doctor who looks for detail, at times some of us have had the opposite! Get better soon MaryF

[Lure2]

Hi happee1,

As said before neurologists are not so well informed about this illness. I have APS with very high levels of all the antibodies that are required for APS since 12 years. They never go away.

My neurological symtoms went away after warfarin 3 years ago. They have not found anything on MRI because I no doubt had micro-clots .I have now a Reumatologist and an Hematologist that understand me. Puh!.....

If you are on warfarin it is important to keep a relatively high INR and to keep it steady. Doctors are so afraid to let us have a higher range because they are used to "ordinary" patients. I guess you already know this but anyway it is really important.

Hope you can get an "APS-doctor" who understands what you are tallking about. The symtoms you have now sounds a bit like clots. It could be tiredness and stress of course. Awful to have a doctor who does not understands you! It is a fight (I have taken that fight several years ago) to be taken seriosly.

Prof Graham Hughes has written a pocket "Understanding Hughes Syndrome, case studies for patients" where you can learn all different symptoms from patients stories.

Good luck to find a professional that understands this rare and difficult illness.

Kerstin in Stockholm

[Lexi_Img]

You may need your INR checked.

[happee1]

thank you all..i was taken off warifrin and put on plavix..was doing fine until i got very overheated in the sun..shame on me i knew better..but i was being stubborn...so i now pay the price...at least that is what i am thinking...

[Lure2]

Hi happee 1,

I understand that Plavix is about the same as Aspirin as I was on before I tried warfarin and was OK (most of the neurological symtoms). It sounds like you need something "stronger" and that you have some sort of clots of TIA.

Hope you get your APS-doctor now! Keep well! Kestin