EEG examination with difuse findings

[chlowy]

I had a checkup at the hospital a while back where I was informed they had found difuse findings in my eeg examination a while back witch needed further examination. I've bin refferd to an MRI scan to see if they can find anything there. I'm usually not worried about my appointments but this time I'm a bit worried. I like things to be okay in my brain especially. Have any of you had findings like this related to APS?

[Lure2]

Hi chlowy,

I know you are from Norway. We have been speaking to eachother some months ago.

You must find a Doctor who understands that your cluster headache is from HS/APS and needs a higher INR than 2.5 or whatever your Doctor thought was a good level!

APsnotFab suggested you to go to prof Hughes in England. The best option there is!!

It must be a Doctor in Norway who probably is a Rheumatologist and who knows autoimmun illnesses and what prof Hughes has learned us about this rare illness which he found in his research a little more than 30 years ago.

Have you something positive as to your INR or looking for a Specialist today?

Best wishes from Kerstin in Stockholm

[chlowy in reply to Lure2]

Hi Kerstin,

FInding someone i Norway who understands the diagnosis and are willing to use Dr Hughes research as a starting point for treatment is a problem. I've got a family member who has her specialist see if he can find someone, but after speaking with other with APS in Norway it's not looking good. Different hospitals even have have different type of specialist. I see a immunologist.

If things doesn't change I might have to look into to the cost of seeing Dr Hughes.

My EEG result did not have anything to do with the cluster heache/migraine orginally that's why it worries me a bit. I'm a bit stuck in the middle because my immunologist and my neaurologist doesn't agree on my head ache issue. Luckily my GP is understanding, and push for answers, but even she has difficulties getting them from the specialist.

[Lure2 in reply to chlowy]

The problem for so many of us with HS/APS is that the Neurologists do not "get" that we must thin our blood!!

I can tell you I know no one here in Sweden to talk to who has got my illness. Also this illness we now know is hereditary.

APsnotFab has answered you earlier and she has great knowledge of these problems from own experience also.

What I could do is to speak to someone here in Sweden if they know a Doctor in your country. All are on vacations now but I am going to see my Rheumatologist this or next month and I could try to ask her, but please do not trust me there and wait for my answer. Probably not a good idea anyway. Someone in Norway should know.

What is your INR put on at present?

Kerstin

[chlowy in reply to Lure2]

I'm starting to see that now. I was hospitalised a year ago with symptoms of TIA, but neuro concluded with it beeing a muscle problem. Did CT without it showing, but my immonologist says TIA doesn't always show on CT screening and with APS this is a more likely diagnosis.

While writting to you now, I just remembered we have a private hospital in Oslo. I'm gonna check with them if they have a specialist who are familiar with APS.

My INR is still only between 2.5-3.0. They refuse to let me keep it higher, even after showing them the research from Prof. Hughes. They are stuck on the too high risk for bleeding. Even though I feel better with a higher INR.

[Lure2 in reply to chlowy]

I have micro-emboli and they are not seen on a Scan or MRi or whatever. I am triple-positive with very high titres though. The Experts know now about micro-clots etc and those can often be seen in the brain.

Try to find an Expert!!! Good Luck!

Kerstin

[Lure2 in reply to Lure2]

Also read by prof Graham Hughes "Hughes Syndrome - The Antiphospholipid Syndrome".

There are very good articles on pinned posts and I have suggested to hundreds (yes almost think it is nearly 100) of members here to read "Sticky Blood Explained" by Kay Thackray. It is not quite new this book, so the latest oral drugs are not there, but Kay have this illness herself and writes about the different symptoms (especially neurological and heart-issues).

I have it in pocket here in Stockholm. There are two books but I prefer the first one.

Good Luck!

[chlowy in reply to Lure2]

I have Kay Thackery's book. I ordered it after seeing someone referring to hit here a while back. My GP has even borrowed it as well.

Thank you for your help. Always good advice here

[HollyHeski Administrator]

I totally agree with Kirstens advice, have you managed to find an APS and headache specualist?

At least investigations are under way... hopefully the MRI will shed some light into your problems.

Keep in touch xx

[Wittycjt]

"Diffuse" can mean several different things, anything more specific?

[chlowy in reply to Wittycjt]

That's is the problem. It only says diffuse abnormalities. Something is wrong, but the examination doesn't conclude with what. Other than it beeing something in my brain.

[GinaD]

Prior to diagnosis, I did not have an EKG but I did have an MRI which showed dozens of lesions in my brain. After being on warfarin for year,a follow up MRI showed only one lesion left. Read books, do balance exercises,

and you might try explaining to your doctor that an INR number only shows how thin blood is when it's in the test tube. And with most people there is a direct correlation between test tube viscosity and in body viscosity. Not true with us! So although an INR of 3 might be scary for a patient who takes warfarin due to a sticky spot in their circulatory system, for most of us APLS patients, an INR of 3 means that,surrounded by our belligerent immune system, our blood will then behave normally. For us, 3=1, or 4=1, and comparing warfarin's danger for us to non " sticky blood" patients is not a valid comparison!

Sounds obvious doesn't it? But sometimes, the obvious is what people miss more often. And doctors are taught in medical school to fear warfarin and that occasional emergency room patient who is having a serious bleed caused by their warfarin medication.

[chlowy in reply to GinaD]

My GP has figured that one out after I managed to get a cut in my finger and they wanted me inn for vitamin K. I didn't bleed more or for a longer period than the average person so no need for vitamin K. She was suprised because she was used to other patients who would bleed for hours with the same INR as me. She is willing to let my INR be higher, but the specialists are not. That's why I'm stuck on a low INR. Looking forward to my self-test INR course in a years or so.

It's bin a high number of fatalities in warfarin use over the years here as well. Doctors haven't keep a close enough eye on elderly people who are on it. And it's resultet in death unfortunately. I get they want to be cautious but my INR is stable. I've had a couple of drops over the past year but other than that it's steady so I do not see the problem inn trying with a higher level.

[GinaD]

Good luck, and glad at least one of your doctors understands that " sticky blood" behaves differently from normal blood!