Probable TIA's

[stillwaiting]

Am I right that a TIA doesn't necessarily show up on an MRI?

Following my afternoon in A&E I had an brain MRI and last Fri got results. The dr said that the good news was the MRI is clear but he felt that I was probably having TIA's. He said that his own APS patients do not have as many of these attacks as I seem to be having. He told me what I must ask my own APS consultant. He thinks that the artery that goes into the language centre is being compromised hence why my speech goes.

He says continued use of warfarin should make the attacks fewer & further between.

Having suspected TIA's - will that ensure I stay on warfarin?

As my INR & attacks are so unstable my consultant has referred me to St Thomas' (appointment next week).

I seem to have tons of questions but don't know where to start.

Thanks for reading.

Lynn.

[MaryF Administrator]

Hi there, you appear to have a very good doctor looking after you and giving you good information. My daughter has had similar to this, including a witnessed couple of TIA's how nothing showed up on her MRI and being Sero Negative and thankfully being kept an eye on by London Bridge we should get more answers. He is right about the anticoagulation and I am glad you have been referred to somebody with expertise at St Thomas'. Please keep us in the loop as to how that appointment goes! Also do write down your list of questions, and your medical history before you go along, as it is so easy on the day to forget half of the things you wanted to bring up. Mary F x

[lynzy]

Hi

Mary's right in saying to write all your history down, and if you get it in chronological order for the specialist at st Thomas for next week they'll be very grateful, im sure.

Write all your questions down so you don't forget anything, and it won't matter if they are not in order, they'll answer them for you, they were fantastic with me, and I couldn't ask for better help and care.

[Lure2]

Hi stillwaiting,

I agree with APsnotFab that you must keep the INR high enough. And to see it on MRI it has to be not too long after the TIA and especially if you have microclots it is very difficult to see it on MRI. I am quatro-positive and on Warfarin and selftest to keep the INR stable och high enough.

Good luck!

Kerstin

[Leigha]

Hi Lynn,

Before being diagnosed with APS, I was having many tia's - sometimes up to 4 or 5 a month. Sometimes they manifested themselves by my losing my speech, which was very frightening. My MRI didn't show tia's because I never had them close to the time of attack, but they did show damage. They thought I had MS at the time (I don't) so the tia's went undiagnosed for several years, including a small stroke. So, no, MRI's will not always show this damage. It was 3 months after the stroke I had an MRI and finally a stroke doctor who explained all this to me and he concluded I had had a stroke just from my history. A year later I was dxd. with APS.

It sounds as though you have a very good doctor and are under excellent care.

Wishing you the best!

Leigha

[MaryF Administrator in reply to Leigha]

My daughter has had many of these, but due to being Sero Negative despite teaching staff and other professionals having seen them.... there is an air of suspicion regarding Sero negative Hughes.. however she improved on two aspirin a day and also with the Plaquenil! My son had similar and also has improved not much on one aspirin but at age 12 increased to two, again a difference. Mary F x

[Leigha in reply to MaryF]

It's high time the doctors come out of the closet about Sero Negative patients. I'm not, but that isn't the point. Having gone through years of being denied adequate medical treatment for my primary APS and other conditions, I can absolutely know what it must be like to be Sero Negative and not receive the needed respect and/or care. On to your book, Mary! - we are with you.

Btw, I don't do aspirin, I take nattokinase and it works wonders for me. But, that is me and my situation. We are each different under this umbrella.

Leigha xx

[MaryF Administrator in reply to Leigha]

I have lost count of the amount of messages via here, privately, social networking or other routes that I have received on the subject of Sero Negative Hughes syndrome, people are rightfully very cross, I hope we help on here as much as we can. Thank your kind words. Mary F x

[stillwaiting in reply to MaryF]

I was in effect sero negative until the antibeta2glycoprotein test was introduced - maybe 5 years ago?? And I was finally tested for this (positive) this year. But my new consultant reckons I have had this for 20 years at least as that was when I had late miscarriages. But I was never ever given any help. This syndrome has devastated my life in so many ways - don't get me wrong I have a happy family life but I have lost children, can not work, etc. I read somewhere that the longer you go undiagnosed the more damage is done. My memory is very very poor and my speech can just go with no warning. I have also lost colour vision several times.

Sero negative is devastating.

Lynn.

[MaryF Administrator in reply to stillwaiting]

Well said and thank you for talking about it so frankly. Mary F x

[Leigha]

Hi Lynn,

Yes, thank you for your frankness. I also had a miscarriage many years ago and never had any children afterwards, so can understand of what you speak..... all the doctor said was that things 'did not look right'.

Many strange symptoms through the years, times of losing speech, a time of driving when my eyesight went,

and - yes - this has affected my life entirely. All without help for most of my life, except being told that perhaps

I should see a therapist. I knew that was not correct!

Hang in there, and keep on this site. Not only will you find answers here but there are so many good and caring

folks. The more you learn, the questions you seek will just pile up.

Leigha

[stillwaiting in reply to Leigha]

Thank you Leigha. I was told I had depression and wait for it.... OCD. The OCD because I repeated tasks because I had no memory of having just done them. I told the neuropsychologist that but he ignored it. I also said to him, "I think I have Hughes syndrome" to which he replied, "Ooohh you don't want that, it's nasty" !!!!!!!! No I don't want it but if you've got it, it's best to know and treat it

I am going to write to him and all the others who let me down - a polite letter along the lines of "If you still have records on me please could you add this letter. I have been diagnosed with APS" I am not doing this to spite them but they need to know for other poor souls who end up sitting before them.

Thankfully Leigha I do have children - 3 sons in their twenties - at that time little was done so I have been told that it is quite unusual for an older APS patient (I am 50!!) to have three children. I nearly lost 2 of them during pregnancy and birth but again nothing was really done. My husband and I were left totally alone during the last birth! Nowadays it is different and much more is known and can be done.

Several years ago I was asked to counsel a young woman who had lost a baby before a lupus diagnosis. As she talked I found myself thinking, "Blimey this sounds like me" I saw her a few years later with her baby girl. Thank goodness she was not sero negative.

Thanks for replying. I am a woman on a mission and intend working hard to get this dreadful syndrome recognised more.

Lynn.x.

[Leigha]

Hi Lynn,

Thanks for writing. You've been blessed with 3 children, but can tell it wasn't easy. Gosh, I have other health things that have had for almost 25 years and the medical care has been so hard, was just dxd with APS 5 1/2 yrs ago. I'm older than you, so know how frustrating it all is. Have had a few really fantastic doctors but the bulk of them are either ignorant or just don't care. I'm here in the States..... it seems there is more being done for APS in GB, at least there seems to be more awareness of it.

Doctors too easily label us with depression when we have clinical problems. Heck, we are the strong ones!

Best of everything.... keep up the good fight!

Leigha