Silent stroke?

[Nanny23]

Had MRI of brain and found I had a silent stroke. No symptoms what so ever. Right cerebellum showed chronic small infarct was being tested for hearing loss due to air bag hitting my face in May. This showed up instead. Was told I need to see neurologist to get checked. I am testing positive for APS ANTICARDIOLIPIN for about 2 years now. This came out of no where

[GinaD]

Your post resonated with me. I have bad and good news:

Bad news: My run-up to diagnosis was similar and dramatic. I did have symptoms: migranes which over time, morphed into what I called “panic attacks.” I attributed these to the stress of being a mom of teens until finally someone else noticed that a panic attack was accompanied by face droop and one side paralysis (amazingly — I had not noticed this myself. Hence the FAST ad campaign here in the States.).

But then, even after I myself recognized I was having strokes, the challange was to convince the medical community. After a couple of frustrating weeks a wonderful neurologist ordered an MRI: and there was the evidence! Dozens of TIAs had happened.

Then diagnosis, treatment with warfarin, and the panic attacks stopped.

And the reason for responding with a long post? There is good news! Follow up MRIs have shown that the damage has healed! As that same neurologist said as he posted both films in my treatment room, “I would never have picked that this one is the before and this one is the after. So let me guess: you read a lot?” I nodded yes. “You exercise?” Another nod. “Well, keep it up. Your brain has healed!”

[Nanny23 in reply to GinaD]

Wow. What a story! I never would have found out had I not had a car accident and ear nose throat dr. ordered an MRI. I HAVE TO SHOW THIS TO A neurologist which I have to get yet. Just found this out

[charlieagain in reply to GinaD]

Great news that your brain healed so well and very encouraging to others.

[lupus-support1 Administrator]

I am very sorry to read your message. The stroke, however, did not come from nowhere since you have APS/Hughes.

Do you have a specialist in APS/Hughes?

There are many "specialists" who are not expert in this area, whether it is a rheumatologist, haematologist or neurologist, you must see an expert medical professional.

If you are in the UK, there is a list of specialists on the right hand side under Topics.

With good wishes,

Ros

[Nanny23 in reply to lupus-support1]

Thanks for replying I go to a hemotoligist for APS. but I just found this out by accident actually. I need to see a neurologist I’m told.

[lupus-support1 Administrator in reply to Nanny23]

They need to work together as the stroke was the result of APS.

[Lure2]

Hi Nanny23,

I can guess that you have got a Specialist who understands our autoimmun illnesses and especially APS and who has had patients like you and perhaps also Debbie before.

I do not know if you are on bloodthinner and how many antibodies you have been diagnosed with?

To see a Neurologist is ok but I am not sure they understand our tricky thick blood that has to be properly anticoagulated.

I hope Debbie is ok. Have not heard from her for such a long time.

Give her my love and good wishes and the same to you. Wish you luck!

Kerstin in Stockholm

[Nanny23 in reply to Lure2]

I just found this out by accident. I haven’t found a neurologist yet. An ear nose throat doctor found this out from an MRI he ordered to check loss of heating from a car accident hearing not heating. Air bag hit my face and damaged hearing. The MRI came up with silent stroke in cerebellum. Debbie just taking care of her husband. She’s ok just really busy merry Christmas. Will keep you posted

[Lure2]

I just want to say that you are not sure if the silent stroke is caused by the hit from the airbag or from your anticardiolipin antibodies.

When I had my neurological symptoms I had issues from my ears and balance. Sometimes you know that the Neurologists do not understand APS so take it easy with his findings. Are you on any anticoagulation for your APS?

Kerstin

[Nanny23 in reply to Lure2]

I don’t know if they will ever know what caused it. I was on aspirin but I had to stop cause I have ulcers. I just found this out so I don’t even have a neurologist yet. I go to a hemotoligist for APS. thanks for replying.

[Holley]

When I was at my annual hematology appt two years ago, my attending physician was discussing my case with the resident and mentioned that I had an asymptomatic stroke. I questioned him as I had not heard this before. He said something to the effect of "oh, you wouldn't have noticed anything and it's consistent with your APS." Still lingers in my brain.

[Debbweb01]

Yes I'm concerned about my sister Nanny 23! After Holidays we shall be pounding the pavement looking for Neurologist that has knowledge of APS! Like someone said they need to get together with this and be on same page so my sister can get proper treatment for this dreadful disease! Happy holiday for all of you and Please stay HEALTHY!!! GODSPEED!!!