my best gift I recieved this christmas was having spent some precious time with my son and lovely grandson......

[popshaw21]

just before christmas I had a blood clot on my optic nerve(anterior optic neuropathy)so its left me severely blind which has been difficult to deal with....

[MaryF Administrator]

Nice to hear about your Christmas news, but not so good your current status with your eye, is it both or just one causing your vision failure.. and sorry to hear of this. Mary F x

[popshaw21 in reply to MaryF]

hi,I have lost all my sight in my left eye and ive only got about 20% vision in my right eye.Ive been told by my eye specialist that there is no treatment to restore my sight.ive been given steriods to help stop my right eye getting any worse.I don't know if my right eye will improve,my INR has been fluctuating from 1:6-4:1 I'm having my iNR checked everyweek and has not been stable or consistent for months now.my doctor is baffled to why my iNR is so unstable.my appetite is poor,could this be a factor?

[MaryF Administrator in reply to popshaw21]

Hi there, this all sounds very upsetting and worrying for you, is your GP doing all your care or are you under a clinic regarding your blood, as it sounds as if more detail is needed here to help things settle. Sending you warm wishes, Mary F x

[AlisonT2 in reply to popshaw21]

Hi I dont know if your fluctuating inr is due to your poor appetite, I am quite new to inr testing after developing a PE in October following surgery (I had a gastric bypass), my inr also is fairly erratic and after discussing with the anticoag. clinic they think it is connected to restricted eating habits. I hope this helps.

Also nice to hear ou were able to spend some quality time with your family over christmas. Best wishes Alison

[popshaw21 in reply to AlisonT2]

hello,and thankyou for you imput,I have always struggled with my appetite but I was told by my rheumatologist to eat little but often which I do.so I don't know what else I can do...I know diet is important when taking warfarin and not to go on a crash diet which i have never done,I have been careful with my diet and even if my appetite is poor I still eat little amounts of food.Thankyou for your best wishes and I wish you a Happy new year....regards denny

[popshaw21]

hi,thankyou for your reply,I see my rhuematologist on a regular basis and he cannot exsplain or give me any answers to why my iNR has been so erratic.

[InSpain]

Hi popshaw21. I'm so glad that you were able to have some quality time with your Son and Grandson over Christmas. You are not alone with an erractic INR. I can go one week from 1.3 to the following week with a range of 6.8. The medical team I have do not have any idea why this happens either. I have even been monitored in hospital as an inpatient for a whole month and it still happened even then! My Rheumy is unable to explain why either - it's got them baffled. I'm hoping that I will be fit enough to travel to London for my appointment to see Professor Khamashta at the London Bridge Clinic during January. If I find out any more info I'll keep you posted.

Best wishes from here InSpain xxx

[jetjetjet]

Hi Pops-- you said your appetite is poor , a concern but when you eat are you watching your vitamin K intake . if it is not consistant you will fluctuate. i have a huge problem with my INR , my blood is tested every 3 days- the only vitamin K i get is thru a multi vitamin for now . i don't know if it may be your problem or part of it , but worth checking into. sorry to hear of the eye problem - they check my eyes every 6 months now because of intermitting problems usually because of INR. let me know -----------jet

[popshaw21 in reply to jetjetjet]

hi jet,I do take multi vitamins everyday and have for many years following my first stroke.it is very frustrating when Ive looked after myself and followed all the advise from the doctors and consultants,but still have these problems.I'am having to adjust to losing my sight which I'm finding it very difficult especialy now when i have to go shopping etc....but the worse condition I can't cope with is these dam seizures,which have been going on now for over ten years!..They are very frightening and the visions I see are very disturbing and there are messages attatched telling me to do harm to myself.Thanks for your reply and I hope your problems will improve.regards dennis.

[k7pbx]

So sorry to hear about your eye site. I had my first stroke April 18, 2003 and lost my 90% of my eye site. (This is only my story and I am not implying the same for you). The Drs said that what I was able to see in the next 4 months was all that would ever come back. With that they took away my drivers license. Then 8 months later within an hour almost all of it came back. As you can see my spelling has never come back.

It is VERY important to keep the INR constant. (I stroke at 2.2) Mine has continued to fluxuate for nearly 10 years now. I am tested weekly. Even though my results are read by a Coumadin clinic, I was told by my GP to does it myself keep it between 3.0-3.5 and ignore the Coumadin clinic saying.

I have now had strokes 5x. Learned to walk, talk, read and used my arms as before, all several times now. I now am back working as a broadcast engineer. Why, I am not sure why? I guess it is my way of feeling in control.

What I am trying to say, is that the Drs DO NOT know all they think they do. Hand in there and have the book, "Stronger After A Stroke" read to you, it will help you and really help those helping you.