While it mite not seem like it…

June 8, 2007 at 11:51 pm

physically…you are making progress. You are going to see more specialists, and probably even more different ones after all of that. Just be sure no one tries to ‘taper’ off IVIG or extend infusions by a couple of weeks or months…Because you’re showing signs of a ‘progression’, and the last thing on earth you need is a cut-back on the one treatment that’s given you any relief to date. To change it for less would probably be penny-wise -dollars-foolish! Talk to the physician who has been ordering the IVIG, be candid about what all is going on with you…maybe, your infusion dosages could be increased. I speak from experience, this past year I’m getting 10 mg [or is it ‘g’s] more than before.. It’s really making a difference for the better.

Some research does hint, but not emphatically, that IVIG recipients can require higher or more frequent doses over time. I don’t know of any research into this aspect going on…I’ll double check and let you know if there is… Will get back to you about it all…

As for the stumbling, foot drop and all…have you done any Physical Therapy? If you have, are you now doing any? Were you given any exercises to do at home on a regular basis? It’s easy to stop doing the silly, little strength and balance exercises-until you fall. It’s never too soon to start doing them and do them often to keep yourself flexible and able to have your muscles and tendons strong enough to help you keep from falling…Good therapists are useful also to provide you with more simple silly-seeming balance exercises…when your nerves don’t tell you where you are, well, the rest of you works overtime and that adds to your overall stress. We all know stress is the ultimate devil for CIDP.

It also sounds like the folks you work with are SMART! You have lots to give to your work and the country…even with handicaps that are temporarily slowing you down. They know that you now have limits they couldn’t imagine had they not met you. People always hear of others who have ‘perfectly’ normal lives with MS or the like, but they also don’t fully understand what it does, your co-workers are seeing a live, viable human being who has one really devastating rare neurological disease. Just being there and being tough is education enough for them.

On to the practical issues: Stumbling and going ’tilt’? Do not go almost anywhere without your cane[s] or in shoes. I am only out of ‘foot-protection’ when on that mattress or bathing. No exceptions. I was at a different doctor appt last week, I refused to take my shoes off to be weighed. I said why, and got my way. I was lucky!

Hug your wife and kids with love and appreciation. And then help them to understand what all is going on with you. The more they understand the better they can learn to help and also cope. With kids it’s good to inform them. They could pick up all kinds of ‘notions’ based on vivid imaginations otherwise.

Ok, Tuesdahy – looking for a ‘report’ definitely then!