please no apologies for questions! You are asking very good ones and the more info you have the better! In terms of IVIG and IgA deficiency, you can have a severe, anaphylactic type reaction as IVIG contains small amounts of IgA and apparently if your body will not recognize and accept it and it can be very serious. they would only check your levels if you are going ahead with IVIG as it does not have any bearing on cidp itself. Intersting that you don’t develop measurable antibodies to vaccines – I have not seen anywhere that this might be related to CIDP but it is a disorder of a dysfunctional immune system so who knows? I had a normal IV the first times I received it in the arm for 5 day loading doses, but my veins did not tolerate well and I am petite 5″ and 105 lbs so my veins are not that big- Hang in there!

Hi there – to answer some of your questions my reflexes have been normal or near normal also! The only time they were decreased is when I was hospitalized with diagnosis of GBS – at that time I was essentially paralyzed from the chest down also unable to lift my neck- some involvement of breathing and swallowing and facial muscles . Because I was hospitalized and unable to walk and diagnosed with GBS, insurance did not give any problem with ivig loading dose ( 5 consective days of treatment) . I subsequently relapsed 7 weeks after my first episode and was treated with another 5 day loading dose of IVIG this time at an infusion center . My diagnosis at this time was still GBS. After my third relapse I was re classified as possible CIDP and recommended to go on maintenance IVIG 2 days every 2 weeks. My health insurance fortunately has never questioned the use of IVIG ( I have aetna ).
The specialists were all confused as to why my testing did not show usual findings. I have not been given a name to my particular case but they have ruled out a number of other variants. I have been back to the mayo for a second visit with essentially the same findings. I am now 45- was 41 when it first started and have a history of other autoimmune disease ( lupus). When I asked them if they have seen cases like mine, they responded ” sometimes”. I saw Dr. Dyck at the mayo. I think it helps to see a referral center where they see alot of this, as most small centers or practices see only a few cases. If my nerve root studies did not show findings the next step for me was biopsy. Aslo in my case my weakness was more proximal muscles ie hip flexors . I was told that not everyone is trained in nerve root nerve conduction studies especially in small centers. My insurance covered my consult at the mayo clinic, but I had to pay for travel and hotel expenses. It was worth it for me in terms of knowing I was on the right treatment, the validation ( knowing I was not losing my mind!), and to help make sure insurance could not decline ivig treatment. I have also been fortunate to have had doctors who listened, and were very supportive. At this point, I am stable on treatment and doing much better – I can lead a fairly normal life working part time, raising 2 kids, but can no longer do sports ( cycling, running, skiing etc ) which I used to do and of course IVIG treatments. I wish you luck with your upcoming testing and keep going! Have you had a sensitive MRI to look at your nerve roots? One of the criteria they can use for diagnosis is to find nerve root swelling. they need to use the new more sensitive MRI – good luck and please feel free to ask me any more questions you may have!

There is an excellent article written by Dr.Burt in 2004 which outlines rationale for SCT in autoinnune disease and compares myeloablative vs. non myeloablative. Also gives a summary of history of SCT in treating autoimmune disease- it is interesting to read to get the “lay of the land” so to speak. He also adresses briefly use of allogenic ( stem cells from donor ie non self) in autoimmune disease. The webadress is: media.tripod.lycos.com/1771877/806323.pdf

I think it is important to remember that this treatment is highly toxic, high risk in terms of potential complications and the chemotherapy is associated with secondary problems that may appear years down the road. It is also not known actual remission/ cure rate and how long remission may last. For all those who are wishing they would qualify for this study protocol I myself am thankful that I am not a candidate and have a reasonable quality of life on a much safer regimen. For those who have severe disability and life threatening CIDP they have my full support and prayers as they undergo this treatment, as I would if in that position . I think that this treatment will have a role in severe disease but the real future is a non toxic targeted therapy that just adresses the specific autoantibody without harming the rest of the immune system – as others have pointed out, bone marrow transplant is not new technology just its application in autoimmune disease is new. We need to continue to push for funding for safe, effective and non toxic treatments for CIDP and autoimmune disease for all levels of this disease.