trouble chewing/swallowing and asymmetric symptoms

March 28, 2009 at 5:17 pm

Hi Steveh,
There are two things here that I want to mention, as you mention two different problems, and I can give you some answers as an actual experience that I have.
First, I have full CIDP with full autonomic involvement. About two years ago, I, too, had trouble chewing/swallowing, and they also did tests on me for MG. They also did a swallow test on me, and saw the problems there, (they recorded it, and was able to show me the results, pointing out the problems. They later determined I did not have MG, but because of the autonomic involvement, they then added to my many diagnosises from the CIDP hitting the different autonomic organs/processes, “Dysautonomia with dysphagia and gastroparesis and esophageal dysmotility”. They did put me on Mestinon, later increasing it, and am still on it today. Though, as time goes on, swallowing is now getting worse, and I have to stop eating cookie-like textures, (crumb-like foods), and cut everything up small…I probably will soon have to go on a soft diet. They told me a duodonal feeding tube, (a feeding tube that bypassed the stomach, since the nerves controlling the stomach are not working), might be in my future

Second, you mention the asymmetric weakness.
When I was finally diagnosed a few years ago, after two years of going through what I did NOT have, the end result and diagnosis was, “CIDP with Lewis-Sumner variant”. If you google that, you can read about it. The CIDP in the beginning, only hit the left side of my body, the leg and arm with great weakness, no reflexes, and the normal CIDP tests, (i.e. ooo, the brain fog is making me forget the name of those electronic tests with the needle in the muscles, but you know what I am talking about), all proving CIDP in the left side only. That is the Lewis-Sumner variant, which is rare. Though, later after a couple of years, the CIDP affected both sides of the body.

I hope this gives you some input of a possibility with your daughter–perhaps mentioning to your doctor. I do hope she does not have MG, as, when I was on plasmaphereses a couple of years ago, I became friends with a guy who was also getting PE, (plasmaphereses), because he had MG. He had it bad–would have to get PE once or twice WEEKLY. IVIG did not help him–only the PE would work for him. He was also a patient of my neuro., who is head of neurology at my hospital.