Thanks and an Update

November 10, 2007 at 7:43 am

You all have given me lots to think about, thanks!

We are awaiting the third IVIG tx this coming Monday. It will be the 1g/kg over two days regime. No steroids yet.

The good news is that she is having far less discomfort and really needs nothing for pain. Sleeping better too.

Still not a noticeable improvement in strength, but no deterioration either.

I haven’t found any information about how quickly muscle atrophy sets in. She has profound atrophy of the affected muscles, they are like jelly. Does this have any relationship to the severity of axonal damage? How quickly can one regain tone and at what point in recovery.

We are trying to set up an initial Physical therapy appointment for assessment although I’m not certain there will be much benefit to starting any actual therapy at this time. There’s just no signal going to some of the muscles. Also, she fatigues so easily; breaks out in a sweat just using the walker for a few feet.

Another odd thing, the hands and feet sweat easily ( I presume this is autonomic instability ) and there is a “sticky” feel to the skin, not like regular moisture but actually sticky. Anyone experienced that?

I appreciate all the information about steroids, as it makes me very nervous to consider starting them. The idea of pulsed therapy makes a lot of sense.

Plasma exchange may be an ordeal since her peripheral veins are not the best.

Thanks and blessings to you all,