Jim-LA
Your Replies
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November 23, 2013 at 9:15 pm
You may find this older discussion about Gluten free diets of interest: http://www.gbs-cidp.org/topic/hidden-gluten-allergies-and-nerve-diseases
November 23, 2013 at 8:55 pmI contracted GBS in 2008 and my neuro diagnosed me with CIDP/MFS a few months later. I had serious numbness and tingling in my eyes, mouth, cheeks … mostly on the right side of my face. I could not close my right eye, could not smile (right side), had slurred speech, and difficulty eating.
Today I speak almost normally, I can close my right eye (not as tightly as left), but I still have slight tingling and numbness in the face. I hardly notice it any more because it has become part of me.
I do not think I am a “typical” CIDP patient and most people experience greater improvement than me. However, many with CIDP report still having some residual numbness and tingling many years after the initial onset.
For me, Plasmapheresis did more to control the numbness and tingling than IVIg ever did.
November 12, 2013 at 8:32 pmAfter reading what other forum members have posted and you are still serious about taking legal action, maybe a consultation with an attorney specializing in the area would be in order. Here is one possibility: http://www.vaccine-law.com/default.htm
November 12, 2013 at 8:19 pmJohn, we wish you all the best and hope you kick this thing in the butt.
November 12, 2013 at 8:14 pmThe GBS/CIDP website already has a great deal of information and many discussions on this topic. Go to the main forums page and search for H1N1. You will find links to many good research resources too.
November 11, 2013 at 7:22 pmA stomach illness was where my GBS/CIDP/MFS all began. It felt weird initially, like maybe I had some kind of intestinal parasite. Then it became a sort of dull feeling in my gut that would not go away. I later realized it was the beginning of numbness after it spread to my extremities. By the time I had become completely paralyzed, 10 days later, there was no evidence left behind of any infection when the doctors went looking for such.
In my case, that initial stomach infection has not reoccurred, now 5 years post diagnosis.
I have had colds and the flu since, but none have triggered any increased weakness.
November 10, 2013 at 10:47 pmI have GBS/CIDP/MFS. MFS seemed to mostly affect areas of my face: couldn’t close my right eye, couldn’t smile, slurred speech, swallowing problems, numbness on my face. Most of these problems have been resolved, but not 100% after 5 years.
I also had muscle weakness that affected my breathing and it took a good 6 months before most of that went away (still left with minor breathing weakness). I don’t know if this was MFS or GBS/CIDP related.
A couple months after the onset, I was diagnosed with Atrial fibrillation (AF) and had to be put on blood thinners (Warfarin/Coumadin). My Neuro thinks the MFS may have been involved with AF. I was on this treatment for about 18 months before the doctors felt it safe to stop the treatment and see if the AF was gone. I have been AF free for almost three years now.
In my case the MFS damage seems to have slowly been repaired, some things faster than others, but none of the affected functions are back to pre-MFS levels.
November 10, 2013 at 10:17 pmDaenerys, you did not mention if you have been treated with IVIG or Plasmapheresis, the two most recommended remedies for CIDP related neuropathy.
Immunosuppressant drugs like Prednisone are often administered after seeing a patients reponse to Plamaphersis and/or IVIG.
November 9, 2013 at 4:54 amGH, please pardon my poor choice of words “US government reports”. Just because they are published on a website run by the government does not necessarily imply the government affirms the correctness of the content.
For clarification purposes – Some of PubMed Central’s reports are NIH-sponsored, some are peer-approved by the medical community, and all must conform to certain quality standards: “A journal will be deemed to be eligible for inclusion in PMC if the NLM Selection and Acquisition Section determines that it conforms to the scientific quality criteria specified in the Collection Development Manual of the National Library of Medicine.” More PMC requirements can be found here: http://www.ncbi.nlm.nih.gov/pmc/pub/pubinfo
November 8, 2013 at 9:22 pmAccording to US government reports cited below, Dapsone or Diaminodiphenylsulfone appear to be involved in triggering peripheral neuropathy, especially as the dosage is increased. These adverse effects are said to rarely occur at doses less than 100 mg per day.
Reports:
1) http://www.ncbi.nlm.nih.gov/pubmed/11214480
2) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921741Lisinopril is in a class of drugs called ACE inhibitors. There is no credible information about Lisinopril or other ACE inhibitors causing peripheral neuropathy that I am aware of.
November 5, 2013 at 8:52 pmIf you are talking about Bradford UK, you may get better information here: http://gbs.org.uk. This support group covers GBS and CIDP throughout Britain and Ireland. You can contact them about possible CIDP specialists in the Bradford, West Yorkshire area here: Helpline 0800 374803 or 1800 806152.
November 2, 2013 at 11:23 pmDrew, thank you for taking the time to build your website and share it with us!
Having been involved in running surveys myself, I found the survey information to be especially interesting. I hope you don’t mind that I have some questions that may help me understand and interpret the results better:
1. What is the estimate of survey error? I find this calculator to be helpful: http://www.custominsight.com/articles/random-sample-calculator.asp
2. How and where did survey takers learn about the survey to participate in it?
3. How do the results of the survey compare to similar surveys taken by organizations?
4. What are the categories or trends most divergent from organizational surveys and why do you think that might be?
5. Since a large number of GBS/CIDP victims cannot be on-line to take surveys due to the disease itself, do you think the survey results could be skewed by that missing demographic?A survey such as the one you carried out is not simple by any means and you are to be applauded for the effort you put into it. Thanks again for the helpful information you have kindly contributed to your fellow sufferers.
October 30, 2013 at 9:39 pmHave you considered getting IVIG treatments at home?
Getting IVIG through home healthcare is usually covered by insurance and is a lower cost alternative to a hospital. You and your doctor would pick an agency. Make sure the agency is listed as a ‘contracted provider’ by your insurance and confirm they will take your insurance as payment in full (maybe your insurance requires a deductible and/or some cost sharing). Then your doctor would need to write prescriptions for it.
Another option to consider would be subcutaneously administered IVIG. This is a newer option to the traditional IV’s. Subcutaneously administered IVIG does not require an IV or a port and some patients can give it to themselves, lowering costs substantially. Learn more about it here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783
October 26, 2013 at 5:14 pmPlease see this recent thread regarding Rituximab: http://www.gbs-cidp.org/topic/rituximab Maybe Rick3224 could address some of your questions under his thread.
October 24, 2013 at 2:54 amSpencer, the common flu virus should not trigger the GBS. There is always a chance that you could get GBS again. But your chance is no greater than if you never had GBS.
In my case, the GBS was triggered by a virus that mimicked my nerve fibers. My autoimmune system responded by producing antibodies to kill-off the virus, and the antibodies killed-off my nerve fibers too.
It is extremely rare to get that kind of virus (such as cytomegalovirus and Epstein Barr virus). The chances of getting the virus from the common flu here in the U.S. or Hawaii are probably 1 in 1,000,000. You would have a better chance of getting hit by lightening or winning the lottery!
