helpful info–thank you. Yes the one day at a time–I hear you, that’s what im doing with this whole thing too, trying not to rush into anything. I have high hopes that the IVIG will work for me–But, Its good to know whats available if it doesn’t. In the event the ivig isnt going to work I want to have this process started or at least do lots of research on it so im not without treatment for a lengthy period of time giving the nerves more time to degenerate. I am excited to see what you find out in a few weeks–the anticipation must be horrible for you!! How were the accommodations in the area? were there reasonably priced hotels nearby? My insurance is anthem blue cross, the ppo plan. They have paid all my costs so far to receive treatment in Mass even though I live in Maine, so far they have been great through this whole cidp journey I’m on. Lori
Thank you Linda for your kind words.
I just returned from a 7 day bicycle tour and was able to keep up with the rest so I was quite pleased. Last year I had trouble standing up on my pedals, but this year it seemed easier – so maybe there is gradual regrowth of the nerves to replace damaged ones. I hope!
Knowing how much worse many others have it, I am thankful each day for the prescribed Rituxan which in my case provided excellent results. Despite the efforts we take to stay healthy, eat properly, avoid smoking, etc, life still seems to be filled with so much unpredictability and luck. We need to all be thankful to be alive. I think about this often as the doctors say the MGUS neuropathy could come back at any time. It is an incentive to “carpe diem”.
I was really starting to get concerned. By Monday, I had to use the walker again as I felt unsteady and my toes and ankles were not moving again. Also, tingling in hand has increased. I called my neurologist and his assistant said I should go to ER. Well, I was out of town and did not want to go to an unkown hospital so I toughed it out until I got home. Today, Wednesday, I feel stronger and legs feel stronger. So, I think it was a residual from working too many hours and being ill. I do not see that the symptoms are progressing so I quess I just have to watch trying to work the 12 hour day