twitching/fog, etc.

May 9, 2008 at 10:30 pm

[FONT=”Book Antiqua”][SIZE=”1″]Oh my! I haven’t been on this website for awhile but your husband’s story is eerily similar to mine…..

Twitching has always been one of my main symptoms but it isn’t usually found in CIDP patients. I also have extremely weakened and severely atrophied leg muscles. Falling is not uncommon for me so I must use a cane at all times.

The brain fog is whacky – but I attribute it to the meds that I must take. I constantly forget my assistant’s names at work, unable to remember why I walked across the room, etc.

And, IVIG worked for me initially but then developed a full body rash. Uck. So, I was on plasma for 2-1/2 years. Then my neuro decided to attempt IVIG again and this time it was a newer brand that was available plus I was given a steroid at each treatment and this helps to prevent a rash. It’s now been working for me for almost 3 years with only an occasional rash spot. Also, I’ve been on cellcept for two years.

Does your neuro indicate any knowledge of these other options? I feel fairly stabilized now even though the twitching and weakness are slowly getting worse.

There are many options and combinations that are available. If you aren’t feeling like you are getting everything that you can from your neuro then it’s ok to look for a second opinion.

Are you near New York City? I know some incredibly gifted and enlighted neurologists.