Doing much better today

April 14, 2009 at 7:03 pm

Thank all of you for information and support!

I hate this disease! That said , I have received many blessings while ill. Support, caring and information from this grp is just a part of it.

Swallowing problems are at bay again, for now. I had Integrative Manual Therapy(IMT) yesterday… my PT for 3 hrs yesterday. My extremely competent therapists were not letting me leave without multiple swallowing test, and IMT treatment for swallowing until I said things were much better.

Like you Ken, I also have autonomic issues, before IVIG I was wasting due to GI problems, had swallowing issues, respiration problem, and many more seizures than I have now. IMT and intravenous nutritional support was what kept me going while fighting my insurance co for IVIG. Things should get better again, as we go back to a higher dose of IVIG again, but starting abt 6-8 wks ago, some of the autonomic issues that had left, returned.
I have never lost the dystonia that comes and goes in my left limbs.

As far as chest pain.. it is far less, 90% less than yesterday. The increased dose of lyrica that my neuro recommended for nights effective last night may be helping, but I have taken nothing for pain today. Currently at almost 7pm, I am tired, cooking dinner, and will shower and rest after. I did do a bit of raking, had to get the leaves off the sprouting bulbs, and a load of laundry.

Hopefully tomorrow, I will be even better.
Have a good evening!