Saga continued.......

[Ozchick]

Well, Neuro didn't have great news but has decided to get me to have an ambulatory EMG over 3 days. I will stop anti seizure meds 1 week before and *maybe* pick up an anomaly during the 3 days I'm wired up. Still off driving for 6 months and has strongly advised against my planned trip to KL in 4 weeks. He felt that in view of what occurred in hospital it wasn't unreasonable to start the meds and so far other than the fatigue no further seizure has occurred. All scans are clear other than a bit of normal brain shrinkage with age and all still pointing to micro clots.

I guess I'm still a bit wary with the LMWH because I did still clot with this after 12 months or so, so just have to keep my eye on the ball. I'm the only triple +ve patient my haematologist has so he's probably learning as well the crazy stuff the can happen to seemingly 'stable' patients.

[KellyInTexas Administrator]

1. Curious... is KL kiwi land ? New Zealand? I seem to remember that from some far depths of my memory.

2. Do sleep deprive yourself if neuro is trying to catch a seizure

3. You were in hospital very sick- and clotting with a bowl clot, or scar adhesion? Important difference - one indicates you had a low INR.

Did you undergo surgery at that time? If so, obviously you under coagulated for a time.

[Ozchick in reply to KellyInTexas]

Kuala Lumpur not NZ-bit of a further flight away. Scar adhesion likely cause as was already on therapeutic dose of LMWH for about 3 weeks when this happened. I have had these obstructions in the past and usually resolve with nil by mouth and a nasogastric tube (invention of the devil to insert!!) More surgery=more adhesions so try to avoid unless absolutely can't be avoided.

[KellyInTexas Administrator in reply to Ozchick]

Yes, exactly. We are in exactly the same awful boat. Just replied on your other post.

[MaryF Administrator in reply to KellyInTexas]

You two ladies are having a really horrid time, I hope things improve as fast as possible, thank goodness you both have skilled medical teams helping! MaryF

[Amyd43]

Do you take an anti-seizure medicine called Klonopin?

[Ozchick in reply to Amyd43]

No, I take Keppra (Levetiracetam) and so far as I'm aware I've had no seizures on this.