St. David's Rehabilitation Hospital. Physical rehab, not drug rehab

Rehab day 1, Thursday March 28 - I'm laying in bed in St. David's Rehab hospital and I decided that I  needed to start journaling all of this as it happened to help me cope with the emotional part of it. On Saturday, the 24th, I woke up with both of my legs paralyzed.  Not just paralyzed but completely flaccid.  Paralysis is not something new to me, but usually my MS affects 1 leg at a time and my spasticity usually stays or increases.  The previous week, I had been sick with a UTI and asthma, so my pump doctor increased my baclofen pump dose quite a bit on 2 different days.  The initial thought was that it was increased too much but after a decrease of 40%, there was no change.  The initial increase was only 20%. We ended up decreasing it by more than 60% and we are still not seeing much improvement and no increase in spasticity. The consulting neurologist, not my primary neurologist, quickly decided this was not my MS because of the lack of spasticity (I agree).  Among the differential were a virus i n the spinal cord which would be difficult to test for and an autoimmune disease called Chronic Immune Demylenating Polyneuropathy (CIDP),  I'll put a link to the disease page below so you can learn  more about it. They really couldn't do a whole bunch to figure out what it exactly was since it really could take a while.  They decided to treat me with 3 days of IVIG, treatment of choice for CIDP and send me to rehab. I will be here for 2 weeks minimum.

Overall It has been a very emotional week for me.  Each flare brings a certain amount of uncertainty, but I’ve had enough of them that I know I usually get some amount of function back.  I know how to maintain my independence at those lowest levels of functioning. This level of functioning is so far below though that I don’t know how to perform even the most basic ADLs this way.  I’ve really tried not to focus on that too much knowing that rehab can accomplish amazing things but it is hard when someone is having to wipe my butt after I have a bowel movement. I sometimes lay there trying to keep the tears out of my eyes while they are cleaning me up.  I think that is what has been the hardest for me. The staff has all be very compassionate as they help me with all of it like rolling over in bed and repositioning, something most 6 month babies can do. They also don’t treat me like an invalid. They allow me to do the few things I can do then quietly help me with the rest.  The real therapy starts tomorrow. I’ll have a PT and OT evaluation. I will write more after that.

Here is the link to the CIDP info.  Remember, I have not been diagnosed with this.  This is just in the differential.  Also, I don't know if this is in addition to my MS or if it would replace my MS diagnosis. https://rarediseases.info.nih.gov/diseases/6102/chronic-inflammatory-demyelinating-polyneuropathy