Hooray, hooray! We all look forward to your post telling us that you no longer have any need for a power chair and rarely use a walker. Keep on going!

Sounds like you have a nurse who doesn’t really know what he/she is doing. You should insist on a rate no higher than 60. It is a well known fact that the higher the rate the more likely there will be a reaction. It is your body and not the nurses or anyone elses. Stand your ground. Start at 30 and then go to 60 and stay there. I spent 9 years on IVIG every 3 weeks. Rate and percent solution are big deals. Take charge.

Hi,

I guess the neuro would say it is ok because he/she believes it to be ok. Many of us get the shot annually and many of us don’t. I have had cidp for 14 years and have had the flu shot each year with no problem. Each of my neuros (4) have said I should get it. One bluntly said “flu will kill you but you already have CIDP which won’t kill you”. I found out the hard way a year ago what an infection will do to my cidp and I don’t want another one. I will get the flu shot again.

Hi Lisa,

I think I know how you feel. I am not wild about new things. I had IVIG for 9 years and it worked well. Then like you I had a reaction that they labeled “anaphalactoid” and my two docs said they would sign no more orders for IVIG. They put me on plasmaexchange, tubes in neck and all. It has worked well but is very time consuming. 5 days every 4 weeks is a lot more than one IVIG every 3 weeks, plus I must now travel 3 hours round trip as opposed to 10 minute round trip for IVIG. After two years plasmaexchange I now have a fistula in my arm and it is a lot simpler and much safer than the neck catheters. I hope that your experience with pe is as good as mine.

Why hospitalized? I go into the dialysis unit as an out patient for my pe.

Forget the insurance company. Of course they don’t want to pay. Find a good plaintiff’s lawyer.

Stacey,

It took about a year from first “real” signs of CIDP to treatment for me. Down hill all the way. I never thought about “accepting” or not. I just thought treatment would make me “ok”. It did. Fatigue always there but I was again able to hike and climb and run. Lucky me. I still respond well to treatment. But, if I don’t get treatment I am quickly unable to walk, etc. I guess I sort of take a “Polyanna” view that it surely could be a lot worse. I can think of a lot of things out there worse than CIDP. I don’t mean to say CIDP isn’t bad for it is. But I would rather have CIDP than lung cancer, heart disease, Lou Gehirg’s disease. Of course, I would prefer not to have CIDP or anything else. But, I am where I am and that is where I am and feeling sorry for myself just doesn’t get it done. HOWEVER, who knows, you and I might some day get better! It might go away! Mean while, we do the best we can.
When you reach the end of your rope, tie a knot and hang on.

Yes, I had the same experience. The solution was to reduce the time between ivig. I started at every 8 weeks, then reduced to every 6 weeks, then when I started to backslide, reduced to every 4 weeks and finally wound up after a couple of years at every 3 weeks which kept me running for years with no back sliding.

I was seen by a physiatrist at the beginning of the diagnostic period for my neurological problem. The physiatrist ran the standard EMG tests and then referred me to a neurologist for diagnosis and treatment. What I know – which is very little – of the area covered by “physical medicine”, the area of expertise for a physiatrist, would not have a physiatrist treating neuropathies especially not one as seemingly complex as CIDP. The following is info I picked up from the Ohio State school of medicine:
“A Physiatrist is a medical doctor who has specialized in the area of Physical Medicine & Rehabilitation (PM&R). PM&R is the field of medicine that is primarily involved in improving the functional ability and quality of life of people with congenital or acquired disabilities. A Physiatrist not only manages the rehabilitation of people with strokes, spinal cord injuries, brain injuries and other severely disabling conditions, he/she also is involved in taking care of individuals with work injuries, sports injuries, amputations, or chronic pain.

A Physiatrist also performs EMGs and nerve conduction studies to evaluate people for problems with their muscles and nerves. In addition to utilizing traditional medical treatments, Physiatrists work closely with other rehabilitation professionals such as physical therapists, occupational therapists, speech therapists, rehabilitation nurses, psychologists, and social workers to provide the most comprehensive, quality care possible. ”

I hope this is of some help.