Reply To: Relapse

September 2, 2018 at 12:49 pm

Thanks Jim. Abigal and Aaron, I definitely know how you feel. I posted in early July about my relapse.

It isn’t like I can’t walk, but this relapse has taken me from 90% of my former self (which I was really happy about that progress) back to 70/75%.

My inner strength and stamina is definitely drained. Numbness returns randomly to my hands, arms, legs, and feet. Some days it is bad, other days, better.

Additionally, I get easily winded and I’m just tired.

My neurologists gave me a couple of choices last week. IVIG once a week or we can add Plasmapheresis to the equation. The high dose steroids don’t do much for me, imho.

With Plasmapheresis, he said a week in the hospital? Then there is the port, which I’m simply not interested in. And with the weekly IVIG, that means I have no free off day since I work 6 days.

Even with good insurance, I have to save to meet my yearly $4000 out of pocket expenses.

It just seems like a losing situation. I’m tired. All the progress I made over a year just disappeared in a matter of days. And frankly, I’m not sure what to do.