Tuesday, February 8, 2011

Monday's update

As always,  my appointment with Dr. Boughaba had an anxiety relieving effect.  I consiuder myself very fortunate to have found her.  We talked about finding a new neurologist in Statesboro and she is willing to help with the search.  That was a big relief because I hadn't been able to find any neurologists there that specialized in CIDP like she does.

Chronic inflammatory demyelinating polyneuropathy is not a progressive illness, it is an intermittent condition.    She was concerned that I might be having a flare up when I told her about feeling more fatigued lately and off balance more.  She proposed extra IVIg treatments for now.

She visibly relaxed when told about my having the flu at Christmas.  Six weeks later, I am still recovering.  The good news is that is probably the source of my weakness and balance problem and I will not be doing extra IVIg.

I am going to continue to reduce prdnisone; from 30 mg a day to 25 for the next four weeks, then down to 20 mg a day for another month and finally 15 mg a day.  Her hope is that I will be able to discontinue the steroids all together.

Physically, I am in much better shape; my strength in the arms and the legs is much better.  There are  no reflexes in my legs and the neuropathy in my feet is still lingering.  My hands are also on the weak side, but not too far below what is considered normal.

I am scheduled to get my ankle-foot orthotics next week.  For some reason, I am not looking forward to getting them; I fear they will make me look like there is something wrong with me.  That doesn't make sense, but it is a close as I can get to explaining it.

I am aware that they:
     1) will help me improve my walking
     2) are not going to be permanent
     3) won't need to be worn everyday

I feel guilty about my attitude, especially when I think about how far I have come and how fortunate I have been to have such great care.  But as the one year anniversary of my illness approaches (symptoms appeared in early March and my first hospital stay was March 19th, also the last day I worked, drove, and wasn't labeled "Fall Risk," "Disabled," or "Handicapped"), my frustration and anxiety levels are increasing.

Please feel free to leave your comments below.

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