APS brain fog

[Lesley61]

Hi just for tha last few weeks I lost a day one week and still don't know why and if some tell me some think I move away have to go back as forgotten want they sed and as for names we got 2 dogs and 3 cats I can not remember they names not all the time some time I feel so daft can remember years ago but it's thinks that are going on now my husband say thinks to me and the kids and than can remember some of wot they sed but not all dose it get like this I am going to doctors to day about me not been able to eat cos I am sick or at the tolet all time iv not got runs but can not eat any think I go on my hols in 21 days don't won't to be like this then do you think I should tell me doctors about forgetting thinks xx

[MaryF Administrator]

Hi if this has got worse please do check in with the GP or ring up your main consultant to check your medication and INR, also you need to look at your Thyroid, also D, B12 and Iron, to check what is going on. So often we end up with a thyroid problem and if not treated will cause terrible brain fog! MaryF

[Lesley61 in reply to MaryF]

I don't think iv ever had my thyroid done will let you know wot he say just feel a bit silly some time like it's not happening to me x

[MaryF Administrator in reply to Lesley61]

The trio of disease is Hughes Syndrome, SJogrens and Thyroid, unfortunately the TSH is very unreliable for Thyroid and patients do at times get wrongly labelled as 'Fibro'. As said above, list the things you want looked at including Vit D, B12, and Iron, as well as you usual Hughes Syndrome/APS things, plus the Thyroid Panel, get somebody you really trust to be your patient advocate and help you, it is important that you feel better than you do. Best of luck. MaryF

[MaryF Administrator in reply to Lesley61]

Please read through this also and see if it rings any bells with you:

thyroiduk.org.uk/tuk/about_...

MaryF

[Lesley61 in reply to MaryF]

Yes looked at all that and most of it fits me x

[Lesley61 in reply to MaryF]

Hi been to doctors he's give me tables to stop me been sick iv sent a sample off today iv to go back in 2 weeks aso told him about me for getting thinks he with your illness it will keep happening but we will sort that out later I told him I was going to see some one in Manchester on the 16th ID aso tell them about it I go back to see my GP on the 18th to how I am doing and he sed if I am no better he'd send my for the camera down my throat not looking forward to that may I say thinks do seem to have settled last 2 days so will let you know when I go back and I will tell the doctor in Manchester about my thyroid and D B12 and iron thank Mary x

[MaryF Administrator in reply to Lesley61]

Also remember it is not uncommon to have a real problem with 'gluten' regarding your gut, you do not have to have full Coeliac Disease to have a problem with it. MaryF

[Lure2]

Hi Lesley,

Sorry you feel so bad at the moment! Are you going for your second operation before or after Cristmas? I wish you had a selftesting machine as it can be difficult to keep your INR on 3.5 when you have problems with your stomach also.

I have felt like that. My memory sometimes was so bad that I did not know if my parents were dead or not. At the same time I could have a talk with a friend and she did not notice anything wrong with me. It took almost 1 hour before I could remember and was myself or almost anyway. It was like I was living in two realities during that hour. This happened before i started Warfarin. When I am properly anticoagulated it does not happen any more.

Take care and I hope you feel better soon. See a doctor and cheque your INR also.

Kerstin

[Lesley61 in reply to Lure2]

Had both my operations now keratin and been back to INR clinic this morning my INR is 3.9 don't go back till the 11 Jan and that's the day I go to hospital about my injection in my hip just trying to sort out if they to stop my warfin agine first they all seem to be passing the book but just waiting for them to phone me back xx

[Lure2 in reply to Lesley61]

Good that the operations are over and INR in right level also.

Take all help you can get now these days!!

Gentle good wishes to you from Kerstin

[Lesley61 in reply to Lure2]

They phoned me back and cancel it on the 11th now till they talk to the doctor who is doing the injection so just have to wait for a phone call x

[tim47]

I think you will find that many of us have brain gof (and it can affect spelling by the look of it!) at times, and to varying degrees. I think I;ve heard some say that getting their INR right helps- but you can tell from my answer that I am suffering from ita little at present. Not joking either

[Lesley61 in reply to tim47]

I know it can some time but never been this bad I dis can not spell it but if you know wot I mean lol my INR is 3.9 same just had it done this morning x

[mylafont]

Being forgetful is part of APS and so is the fog, but by all means I think you should mention this to your doctor. If you don't mind me saying, I understand the jist of what you are trying to say, but what is actually written here is a little "off". This happened to me early on when I was first diagnosed. When I'd go back and re read things that I wrote in emails to my family or friends, it didn't make sense.

[Lesley61]

My kids and people say I never make any sense some time I don't look at wot I am putting but I always put thinks down how I say it sorry it's bad some times but I guess that's just me x