Reply To: New- CIPD and Central Nerves/ Cranial

August 8, 2016 at 3:45 pm

Too few neurologists have had hands-on experience with CIDP due to its rarity. As a result, most of us have to deal with “text book experts” that have to pull out their old med schoolbooks and look up the disease. Some may take the time to call associates, but chances are neither has first hand knowledge treating this disease.

Textbooks are going to recommend IVIg because it’s easy to administer, it has a successful history, is less intrusive than other treatments, and the doctor makes big bucks from it. They don’t make the big bucks from recommending the newer SCIg because some of us can administer that treatment to ourselves at much lower costs. Plasma Exchange (PE) requires a port be installed so large amounts of blood and plasma can be removed, filtered, and replaced in our bodies. The port has inconveniences like we can’t get it wet (no showering) and it’s prone to infection if the bandage isn’t changed regularly. However, PE is one of the only treatments that can remove the anti-bodies that are attacking us!

I am still paralyzed today because the textbook expert neurologist that initially treated me told me PE was too intrusive and recommended I go the IVIg route. That decision allowed the large amount of bad anti bodies still in my system to go on an uncontrolled rampage, rendering my condition unrepairable.

If and when my CIDP flares up again, I will demand 3 days of PE followed by 5 days of IVIg/SCIg.