What I Got

Steve R. asks what exactly was the diagnosis, what does IVIG mean and a few other things that I should clear up if I haven’t already.

The diagnosis was that it was a combination of Multi-focal Motor Neuropathy with some CDIP (chronic inflammatory demyelinating polyneuropathy) thrown in for good measure.

Not being a doctor or even close here’s my layman explanation:

First: It’s an autoimmune disease, which means that the body attacks itself, usually in the wrong place, In other words the stuff that’s floating around in your bloodstream, that is supposed to protect you from harmful things, decides that something that is vital to your well-being should be wiped out.

The word “motor” refers to muscle nerve interactions. Neuropathy means that electric nerve signals aren’t getting back and forth to the brain correctly. And multi-focal means it is all throughout the body.

Demyelinating refers to the sheathing surrounding the nerve that is being eaten away by mistake. Without that sheathing in place, you can tell your left foot to lift but by the time the message is delivered and responded to, it may be too weak a signal to be properly executed.

If caught in time (it can be reversed to some extent). Mine was in place for nearly 4 years before it was diagnosed, because symptoms can be confused with Crohn’s disease which I’ve had for a few decades.

IVIG = intravenous immunoglobulin treatment. Immunoglobulin as you can guess is the result of — you know what, you google that.

It is a long infusion. First you get 500ml 0f saline solution. then Benadryl thru IV with Tylenol (prevent reactions to the treatment) then the actual bottle or bottles of IG and finally the last 500ml of saline.

The IG is rather thick and leaves shiny bubbles in the jar. Usually it clogs the drip tubes and causes an alarm on the IV machine to beep and the nurse to start cursing.

The prognosis for all this is a normal life span but you can end up in wheel chair for the rest of your life. Especially if it has hit your legs (as it has with me).

There are also recoveries. For example, when I entered the hospital I had 200 neurologists looking for a single reflex in my body with no luck.

After 8 days of IG infusions, reflexes began to return. Much to everyone’s surprise. So you never know.

I am in the process of a) waiting for an electric wheelchair and b) trying to get infusions from a mobile service that does it where you live, or at a nearby infusion center.

Last choice is back in the hospital for a week every two months or so. More on life on the hospital to come.

Published by Dave

My name is David Beckerman. I am a fine art photographer working in New York City. Or I was before I had two strokes. I now write from a Nursing Home. https://dave-beckerman.pixels.com

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