Peripheral Neuropathy e-Support

Coping With Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Donald Sharoff, DDS

My symptoms began innocuously with some mild weakness in my legs which I attributed to maybe spending too much time sitting at my computer. Along with that came a rather strange feeling in my feet which I discovered was "sock and glove syndrome" and which my first neurologist ignored.

You have to understand that I am a practicing dentist and when this began to evolve I did a great deal of research on the internet and especially zeroed in on demyelinating diseases. I finally came under the care of a very knowledgeable neurologist at the Neurological Institute at Columbia University Medical Center by the name of Marcelo Olarte. My first medication was prednisone 60 mgs. daily and for a short while it helped and then I got worse. In the interim diagnostic tests in the form of EMG and nerve conduction as well as a spinal tap were performed.

Nothing was conclusive and in the meantime I was getting weaker and finding it more difficult to walk and raise my legs and body. I was then hospitalized in order to receive 5 days of IVig infusion at 60 gms per infusion. I experienced an immediate improvement but it lasted about 10 to 12 days and then back to square one.

In the meantime no definitive diagnosis but a lingering suspicion that this might be a myopathy. It had now been 7 months. I was then hospitalized for a second week and this time they were far more aggressive with diagnostic testing. I again received 5 days of IVig, but the results were not as dramatic. In the interim while in the hospital I had another EMG and nerve conduction test and that clarified my diagnosis as being a neuropathy because of the altered velocity of the nerve impulses in my peripheral nerves.

It was then that Dr. Olarte referred me to his colleague at the Neurological Institute, Norman Latov. What a stroke of good fortune for me to be in the care of this incredible physician. When I saw him I was using a walker. He prescribed 5 straight days of IVig at home (60gms.) and then 60 gms. every other week. The improvement was miraculous.

About a year ago we changed the infusion rate to 40 gms. every week and I am doing quite well. I walk with a cane, on occasion, I am still practicing my profession, and in general have gotten a new lease on life. About 1 1/2 years ago I had a port placed under my skin attached to my external jugular vein so that I can receive my infusions without the difficulty of looking for a viable vein for the infusions. This came about when I finally reached the realization that CIDP is a chronic illness and needs to be dealt with accordingly. I go to physical therapy on a weekly basis and the results of my treatment are apparent by the definitive improvement in my muscle tone in my legs and feet. Balance is still something that is not perfect but I am learning to adjust.

My recommendation to anyone with neuropathy, diagnosed or suspected, is to seek medical care with someone who has much experience in this area. If in doubt contact the Neuropathy Association for help and advice. They have a wonderful website and there are lists of neurologists who treat this type of disorder. If one does not live close to a medical institution that specializes in treatment of neuropathies, then travel to wherever it's necessary because it can be a matter of quality of life and with the advent of the internet there is a wealth of material out there.

I would be more than happy to communicate with anyone who has questions and share, with them my experience and whatever knowledge I have gained along the way.

Seeking Information and Help

One of the most important aspects in coming to terms with an unknown illness prior to diagnosis and even after is to seek information. You must be able to ask questions and expect answers. Even when a diagnosis is difficult to make, as is the case with many neurological disorders, and especially the neuropathies, increasing your "medical IQ" is a must.

Do not be afraid to ask questions and be prepared to seek other expert advice if necessary. As I said previously go to a hospital or medical center that specializes in neurological disorders. If I learned one thing in these last 3 1/2 years it is that YOU MUST BE YOUR OWN ADVOCATE. Become knowledgeable about different approaches to treatment, and look for research that is currently being done( use a search engine such as Google as I do and put in CIDP research, or neuropathy research).

As an aside I have communicated by email with a number of research people giving them my background and treatment protocol and received communications back from almost all of them. Don't be afraid to ask, and seek information and be proactive because it's your life on the line. By sharing with others I find that it makes me feel better and fulfilled. By helping others you help yourself feel better mentally and that in turn helps you to cope with the changes that have taken place in your lifestyle.