This Is MS Multiple Sclerosis Community: Knowledge & Support

Although I'm sorry about her lost hope, I wasn't aware that you guys had gotten her irregular heartbeat issue straightened out.

Maybe that's something of a silver lining?

Dear TIMS members:

It has been almost a year since I read about CCSVI on this website. In that time, Boopie has gone from having the no hope for stopping her progression to slight hope with reservations to brief joy at short term results and back to zero hope.

Let me explain. She was scanned for CCSVI in March with Doppler and MRV. Stenosis was found in the right IJV and venoplasty was performed in April. She experienced some short term improvements which disappeared after 1 week. It has taken us until Sept. 1 to get her back in for re-evaluation. We we certain that she re-stenosed, however, the IR performed another catheter venogram and didn’t detect any stenosis or lack of flow in the IJVs or the azygos. He even used a different probe for the azygos which he said allowed him to get into the curvy part. She was put under heavy sedation for the procedure and feels terrible today. The fact that he found nothing to angio makes me feel terrible. Worse than terrible, because this was the only thing we had to pin any hope on. It was logical and made sense. Now, nothing does.

I have a CD of this procedure and of the last one. I would like to email it to Dr Sclafani, but don’t know where to send it or how to do it in a PM. I don’t know if anyone can really say for certain what is going on with Sharon. I just know that since the relapse she is much worse than before. She can no longer stand at all. Her cognitive abilities come and go. She is angry at me most of the time. When she is not angry she is crying. If neither of those, then she is playing Farmville 24/7. I think she gave up a long time ago. Now that we were shot down at the IR, I don’t know what to do, what to obsess over, what to pursue. She doesn’t need to chase after every new fad or idea in the MS world, we have been down that road. But one thing is certain, if we do nothing, she will only get worse. We’ve tried that, too. So my friends, life goes on, however briefly. Just make sure you are all appreciating every day you have with your loved ones. Thanks for all your support over the past year.

Andrew

I'd probably be a horrible, mean person all of the time