Reply To: How long after onset did you begin to actually lose strength, not just weakness?

June 4, 2015 at 3:43 pm

Here is an update:

I spent 10 days in the hospital in April having Plasmapheresis done. The experience was nothing like I thought it would be. Many act like it’s painful. And to some it may be if they are prone to high anxiety or have a very low pain threshold. You do get tired of the needle sticks for blood work everyday, sometimes twice a day. For what it was, it was quite pleasant. I did find that I am allergic to latex and adhesives. Be mindful of your blood pressure. Mine dipped really low a few times. Avoid Benedryl as it will lower your BP.

Unfortunately, it did not help me with the symptoms. Maybe I went too long before being diagnosed.

A few weeks ago, I underwent my first 5 days of IVIg. It too wasn’t a bad experience. I did get fever and chills one night. But I was diligent in staying well hydrated. That is the best thing you can do for yourself. Drink lots of water beginning a few days before through a few days after. Again, drink lots of water throughout.

I go for another round next week. So far, not much has changed. But I know it can take a while. While my employer was been very accommodating by allowing me to work from home, that has run out. As of Monday, I will be on unpaid leave while I wait for short-term and then long-term disability to kick in.

I know I included information that was not asked for in this thread. I just figured someone reading it one day may be wondering.