Skytim Welcome…

Anonymous
November 5, 2007 at 12:00 pm

though I truly wish it was for different reasons?
Also, it is unfortunate that you have had to learn about this disease in such a personal way. What IS fortunate tho, is that your wife was diagnosed so rapidly and received IVIG so soon after ‘onset’. It could be that the doses she is getting are not enough or a whole slew of other issues could be interplaying with treatment. Many who have CIDP also have other immune issues and it can be a case of which came first? or, Who’s on first?
I first when I’d been hit with this, was mis-diagnosed, I was not internet-wise at the time and followed my own instincts in the ‘This is NOT right!’ vein and got second opinions until I found pro-active physicians who did the testing [as your wife has had] and received IVIG treatments. It took me over a year to get that diagnosis. Damage had been done, but is improving now over 4 years later.
Web up the following: ‘LizaJane Neuro lab sheets’ and you find a menu [of sorts] put together by many Peripheral Neuropathy sufferers and many of the possible tests and labs that go into a diagnosis. If nothing else, the worksheets help one keep track of all the tests over time? I only discovered this info over a year after I was ‘smitten’ with this all. It did truly tell me that my current and diagnosing doctors did ‘all the right’ things!
You and your wife are near to my heart and prayers.
Kathy, Dana and Cheryl are both right about checking the whole metabolic panel including thyroid [autoimmune] aspects.. I like to think of it this way…I have a wide range of my immune system going haywire! The IVIG keeps it from getting worse and also a bit better! It is hard to ‘think positive’ when such a devastating thing occurs, but other options aren’t acceptable!