Thanks–just never had heard a lot about this and was curious. : ) Lori
Thanks Norb! Gary looks like I need to get my machine ready for racing. May take me a day or so getting her cleaned up. But I will be ready soon. Hmm! That root beer float sounds good. I will give Jan and Emma a break and be bartender tonight. Emma.. ohh those crepes are awesome. First thing I have had all week in solid foods and no pain either on my throat. Looks like I am going to have to eat in here now! 😀 Norb.. what are you grilling tonight?
Norb-I have been listening to Sarah sing for 4 hours. Thanks for the dedication. Can I buy you a beer or something else?
Has anyone seen the bat lady lately? Is she doing around the world flight? Should we feed her bats? I miss her drinking with us and her poetry.
Stu said he would fix a breakfast buffet tomorrow-loves his new kitchen so much, wants to show off his culinery skills.
Fixed the hole in the wall Canada before I went home. Goodnight everyone. Thanks again Norb.
Thanks for that response. I was hoping for some other responses too. My submission must have been too boring.
As DocDavid wrote in his article for PRACTICAL NEUROLOGY 242 in August 2005. © 2005 Blackwell Publishing Ltd.
ME AND MY NEUROLOGICAL ILLNESS.
Chronic inflammatory demyelinating polyradiculoneuropathy
responding to Rituximab.
“A search of the web brought me to two sites [url]http://www.gbsfi[/url] .com and http:// [url]www.gbs.org.uk[/url] on which there are many expert patients and a wealth of knowledge.”
Along with him I have always found great help on these forums.
[QUOTE]Did you know that there are more IgA antibodies being produced by our immune system than any other combined, most of them of the excretory type (IgA2) found on the mucuous membranes. The second type, IgA1, stays in circulation and makes up only about 10% of all the antibodies. I assume it’s this second type that is giving you all your problems.[/QUOTE]
Yes, I knew that IgA was the most common antibody but also that IgA is the rarest of the PDN/MGUS associated neuropathy group. That’s why there is little in the literature, there being so relatively few cases reported that it is difficult to gather any clear case comparisons.
Way back in 1998 when at last there was a certain diagnosis I had to accept what my neurologist believed then that possible treatments had to be balanced between benefits and risks. It’s much like our friend Allaug’s long pain/problem history from the late eighties to 15 years later when a haematologist/oncologist finally put his diagnostic finger on anti-MAG IgM PDN. Then her beneficial treatment with Rituximab after almost everything else before that diagnosis.
I believe that I have mentioned before that we have a good friend of yours here in Halifax, UK with an idiopathic pn 2 years longer than mine but that behaves almost precisely the same as mine. She is also getting loaded with pain but her body is 25 years younger than mine. I am godfather of their younger son, now a policeman.
I am in e-mail contact with my neurologist, by his ‘instruction’. At the weekend he responded to my week 1 report post IVIg within 30 hours and on a Sunday evening. I am keeping Rituximab in mind but cannot find any cases of IgA PDN being so treated.
Hi Norb – thank you for your excellent answer to some of my questions a few days back.
I noticed something else from my records that may or may not have any consequence. In Sep ’05 my quantitative immunoglobulins tested high at 400 for IgM, as I posted earlier. At that time my IgG count was 1460, which is on the upper limits of normal. Then, six months later in Mar. ’06 I had a second lumbar puncture, as a Mayo Clinic doctor wanted to have a multiple sclerosis panel run just to make sure.
This LP detected very well-defined oligoclonal bands in my CSF, which indicate abnormal synthesis of gammaglobulins in the central nervous system. These bands are a marker for MS, but also can indicate inflammatory conditions in general. My CSF protein count was 55, and my diagnosis of CIDP Lewis-Sumner variant remained. Another part of an MS panel is to measure IgG levels in the serum and the CSF to look for ratios that are out of whack. In my case the ratio was within normal.
However, the IgG level in my blood was only 320, which is well below half the lowest limits of normal (694-1618)
So, in Sep. ’05 my IgM was 400 (high) and IgG was 1460 (upper limits of normal). Then, six months later my IgG had dropped way down to 320. IgM was not measured at that time.
Additionally, since early of ’05, and to this day, my WBC runs low. I have a CBC run prior to every IVIG infusion, and the WBC typically runs between 2.0 to 2.5, with low neutrophil counts of around 1.0.
Maybe these are pieces to a puzzle, maybe not.
I don’t think you need ‘ears’ yet.
At least we have our ‘own brand’ of mice?
It’s probably taken generations of mouse breeding to breed out the immune fighting aspects of any creature. With our very own mice, research can go at a far faster pace. Thank you dear mice!
WOW, interesting reading, I just hope that this is something that can come about in a timely fashion for those on this board who get regular infusions of IVIG. How much cheaper & easier it would be for those with CIDP, especially for the children like Emily & Kevie here on this Forum. It all makes sense, now I hope it can be accomplished very quickly.
A friend of my son’s has early stage MS & was getting some kind of infusion or treatment every week up here, now he has just started getting a shot once a month down at the U of MN. Maybe this is something similar in the progress of MS?