lgtaylor100 Posted November 10, 2011 Report Share Posted November 10, 2011 I keep asking my doctor about autoimmune dysautonomia. He says the dysautonomia panel at Mayo is experiemental and that IVIG treatments are experimental. Has anyone in the U.S. received IVIG treatments? If so what tests did you have done first and how did you manage to get these treatments.I know several people in other countries has posted that they have had IVIG treatments but I'm not sure if anyone in the U.S. has had them.Lynne Quote Link to comment Share on other sites More sharing options...
arizona girl Posted November 10, 2011 Report Share Posted November 10, 2011 Hi Lynne, IVIG is approved for the mayo type of dysautonomia. It is not experimental for that form of autoimmune neuropathy. If you google IVIG and FDA you will see all the illnesses that IVIG is approved for, there are a lot, and more coming that are in research protochols currently. It is a approved for polyneuropathy, but not for mono neuropathy, like small fiber, yet! It is considered steriod sparing, as conditions treated with steriods other unwanted illness caused by the steriods. It is already being used for Lupus and insurance if paying for that even though FDA hasn't listed it yet.I get two infusions once a month and my diagnosis code is for hypogammaglobulinemia/cvid. While I do have significant autoimmune autonomic small fiber neuropathy, my large fiber nerves still work, and I had a test for the the one mayo antibody, but not the panel and that came back negative. When I saw Dr. Grubb in toledo, he said that Mayo has found 5 autoantibodies and they will probably continue to find them. He agreed that my neuropathy was autoimmune. I had an infusion yesterday and I am feeling rather good today, I usually feel fluey after infusions. My heart rate and BP have slowly been improving and my pain levels have dropped. Recently, I have finally presented with labs/biopsies suggesting that I have Lupus/sjogrens. So, there is no doubt it is autoimmune at this point. These symptoms and illnesses are all part of an autoimmune and immune defiecency defect and tend to cluster together. IVIG can be difficult to tolerate and it doesn't make you normal again, but it helps with the progression, infection and pain. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 10, 2011 Report Share Posted November 10, 2011 While I do have significant autoimmune autonomic small fiber neuropathy, my large fiber nerves still work, and I had a test for the the one mayo antibody, but not the panel and that came back negative. When I saw Dr. Grubb in toledo, he said that Mayo has found 5 autoantibodies and they will probably continue to find them. He agreed that my neuropathy was autoimmune. AZGirl - What labs or biopsies show Lupus/Sjogrens for you? Is that the correlation with the Autonomic/SFN? I too have been diagnosed with autonomic and SFN, but can't seem to get to the cause (yet). IVIG sounds so promising. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted November 11, 2011 Report Share Posted November 11, 2011 I had a scalp biopsy on a lesion that showed lupus scarring alopecia, w/labs that showed a positive ANA, SSA and SM/RNP at the time of the lesion. I have f/u rheumy labs that are still positive ANA and SSA, the SM/RNP's were normal this time. He also tested thyroid antibodies and I had a postive TPO-ab. The results of the lip biopsy for sjogrens are not back yet, I find out next week. I had had a high positive ANA for years that had been negative until the lesion presented.Autonomic dysfunction is a common symptom for many conditions, some not serious and easily correctable some not. That is the hard part of figuring this out, you got to keep looking until you are satisfied you know why it is happening to you. It has taken me decades to figure out what was wrong with me and about 5 years once we found my swinging HR/BP. I'm one of those that goes up on standing and had no idea it was happening, until a doc said do the poor man's tilt at home. The fatigue on standing and always wanting to sit down and feeling awful when I got stuck standing in place, all made sense after that.If it is autoimmune IVIG is a hopeful treatment, but it is very expensive, hard to get insurance to pay for it, and has some side effects that you have to learn to live with, it isn't magic. I am grateful to have the option, as I was getting worse over the years and then a car accident in 07 caused a rapid decline. I've spent a lot of time researching my symptoms, diagnosis and treatments. Thank god for the web and the info available now, everyone seeking here for answers should use it to their full advantage and not just take someone's personal opinion. Doing your own research is an important tool to taking control of your circumstances that bought you to dinet. Good luck and be tenacious! Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted November 11, 2011 Report Share Posted November 11, 2011 Hi Lynne, IVIG is approved for the mayo type of dysautonomia. It is not experimental for that form of autoimmune neuropathy. If you google IVIG and FDA you will see all the illnesses that IVIG is approved for, there are a lot, and more coming that are in research protochols currently. It is a approved for polyneuropathy, but not for mono neuropathy, like small fiber, yet! It is considered steriod sparing, as conditions treated with steriods other unwanted illness caused by the steriods. It is already being used for Lupus and insurance if paying for that even though FDA hasn't listed it yet.I get two infusions once a month and my diagnosis code is for hypogammaglobulinemia/cvid. While I do have significant autoimmune autonomic small fiber neuropathy, my large fiber nerves still work, and I had a test for the the one mayo antibody, but not the panel and that came back negative. When I saw Dr. Grubb in toledo, he said that Mayo has found 5 autoantibodies and they will probably continue to find them. He agreed that my neuropathy was autoimmune. I had an infusion yesterday and I am feeling rather good today, I usually feel fluey after infusions. My heart rate and BP have slowly been improving and my pain levels have dropped. Recently, I have finally presented with labs/biopsies suggesting that I have Lupus/sjogrens. So, there is no doubt it is autoimmune at this point. These symptoms and illnesses are all part of an autoimmune and immune defiecency defect and tend to cluster together. IVIG can be difficult to tolerate and it doesn't make you normal again, but it helps with the progression, infection and pain.How did they determine that your condition was autoimmune and start IvIg? This is something I've wondered a lot about Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted November 11, 2011 Report Share Posted November 11, 2011 ignore me I just realized that you already replied to this Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.