How old is this forum, and how many members?
AnonymousDecember 12, 2006 at 8:43 am
Since I only joined this forum a couple months ago, I am curious about this.
Since there is SO LITTLE research being done to combat or rid the world of GBS Or CIDP, I just wondered that if there are enough members here, couldn’t we all institute a research project of our own?
It seems we all have different variants, but we all seem to have different problems associated. BUT-are some of these problems the norms for these people?
And what drugs seem to work and what drugs don’t? Couldn’t there be more out on drugs, since we all know the first tree main treatsments of 1.High steroids, 2.IVIG, and 3.Plasmaphereses. But, it seems every neurologist seems to have a different approach to what drugs may or may not assist with the treatments, or what drugs may or maynot be the next step after plasmaphereses.
What are the different stages?
Yes, I know everyone is different, but how many thought to be different, actually are within the norms with many people suffering from the same?
Couldn’t all this collection data BENEFIT ALL OF US, via a rearch project that could be turned over to a neurologist in this field???
Let me know what you all think about it….
AnonymousDecember 15, 2006 at 3:12 pm
This board used to have a lot more people posting than what you see now. A few months (or more?) ago, someone hacked the board, resulting in it being shut down for several weeks. Since the board came back, it seems as if many of the former regular posters (myself included) have kind of drifted away. It’s too; we used to have a lot more activity here.
AnonymousDecember 16, 2006 at 11:43 am
There are those who can tell use more about the history of the forum than I can. There was at least one version of the site that stated before Apr 2001. On 16 Apr 2001 the predecessor to the current site started prior to hack in march 2006 there were over 4200 members. Many were very active. The current site was back up and running on the 5th of May 2006. Some of the old members did come back to continue their history of contribution to education and compassion to those seeking understanding and comfort.
Education and Research are a part of the mission of the foundation.
There are also 160 chapters around the world to help GBS/CIDP with support and education.
The main page for the GBS/CIDP Foundation International
The link for the mission statement of GBS/CIDP Foundation International
The link for the General information regarding GBS/CIDP Foundation International
AnonymousDecember 16, 2006 at 10:30 pm
Hi Ken! Welcome to our forum.
I think the protocal is to go with the less invasive method first IVIG….once you give the plasmaphresis which is very invasive it wipes out any of the benefits of the IVIG. IVIG and Plasmaphresis do not cure it is only used to stop the process of the body attacking the sheath of the neurves. Steriods should not be used for GBS. Many pain meds don’t work for everyone…..it all is differnet and you have to keep trying what works for you! There are also many tests that you can take to see if the Mylin is damaged or if there is more damage done to the nerve itself too. It is really having the medical world test for GBS quicker. Because it is rare it is not recognized by alot of the doctors and it shares traits of other disease also. So they keep testing and ruling out those diseases before they do the other tests.
It is frustrating! Hang in there and help us keep the word spreading!
AnonymousDecember 17, 2006 at 3:22 am
I see you got the answer. People are slowly coming back from the big hack. The site was down for several months as they upgraded security I guess to prevent what happened after the fact, and maybe something before the fact.
As far as using the threads as “scientific data”, the medical community would first claim that any one of us could type in whatever we wanted to whenever we wanted to. So that totally invalidates any of our data. I myself have wondered about some people. I mean their stories seem so incredible. I know the world is a very amazing place, but either some people exagerate a lot, or blatently make it up.
Many other people are telling the truth, because, what benefit is it to lie? At least that is the way I look at it. We are all here for the same reason, to try to get better. Any way we can share information to improve our lives, that is the way to go.
So, if you want to try, ask questions, I am sure that people will reply as best as they can, and qualify, or quantify their responses. It is absolutely true, that you can be a better patient, and get better care if you are more informed about what your choices are and how those choices might affect you. Doing your homework is a necessity if you want to move forward.
AnonymousDecember 17, 2006 at 3:36 am
I get back to the research point regardng the dollar in vs. the dollar out. There are so few of us (CIDP patients) to justify the research money ($$$$$$$$$$) to support a cure. Right now the treatment (IVIG) is quite a lucrative ($$$$$$$$$) treatment for the drug companies. Would they want to give up that treatment(dollars out) for a potential cure? It is like finding a cure for diabetes. Diabetics are the pharmacy’s best dollar per patient I’ll bet. Sure they want a cure for diabetes, but how fast? They will lose their best customers.
I think that when they find a way to tackle auto-immune diseases, they will all fall pretty quickly one after another. Like breaking a code, once they figure out one, the others will be easier. At least I hope so. So if they find a cure for Rheumatoid Arthritis, or MS, or lupus, or one of the more prevalent ones, maybe the same process can be applied to ours.
In the mean time, we can certainly learn from each other in dealing with CIDP and its variants in the manner you describe. Accumulating information can only be a positive. Doctors would love to have a patient base of 60 or 70 to draw information from, at least I would think so.
AnonymousDecember 17, 2006 at 6:06 pm
That’s 1343 for this newer forum, I do believe we had a lot more members before the hacker detroyed a very valuable web site. We had lots of medical knowledge posted and it’s all gone now. We also had one of our senior members(Dan Murphy) who has not rejoined take a pretty good survey and plenty of information, it was alot of work on his part, he then forwarded all medical info to the Foundation for them to give to Doctors who are doing research on GBS/CIDP. We also have another senior member Jethro who collected data and send it to the CDC in Atlanta, Ga.I believe that is where he sent it.
AnonymousDecember 18, 2006 at 11:38 am
Dick, I totally agree with this:
[I]I think that when they find a way to tackle auto-immune diseases, they will all fall pretty quickly one after another. Like breaking a code, once they figure out one, the others will be easier. At least I hope so. So if they find a cure for Rheumatoid Arthritis, or MS, or lupus, or one of the more prevalent ones, maybe the same process can be applied to ours.[/I]
Although lots of money isn’t being spent on CIDP, alot is being spent on other autoimmune diseases. I following diabetes research closely because my son has type 1 diabetes, and I do think he’ll have a better treatment than insulin in the next decade. Maybe not a cure, but a better treatment.
AnonymousDecember 19, 2006 at 2:04 pm
Excellent point about the research into the more well-known autoimmune diseases. I have joined the local chapter of the MS Society and our office is sponsoring the MS walk because I think that research into finding a cure for MS (an autoimmune disease that causes nerve demyelination) will benefit those of us with CIDP. The MS Society was perfectly fine with that; they are happy and grateful for the help.
AnonymousNovember 17, 2010 at 3:08 pm
There is already work being done on cures for a variety of autoimmune diseases. Dr. Richard Burt, Chief of Immunotherapy at Northwestern Memorial Hospital, has begun clinical trials for CIDP, MS, rheumatoid arthritis, lupus, etc. The treatment for all of these, and others, involves autologous stem cell transplantation preceded by high dose chemotherapy. If you google Richard K. Burt, you will be directed to a website that explains the various studies that his division is conducting.
I had an intractable case of CIDP and was invited to participate in the study. I received my transplant 2 months ago. Since then I have noticed slow but steady improvement, despite the prednisone taper (I had been on 60mgs. a day just to keep from further declining. I am on 2.5 mgs now and will be completely off it on Friday.)
The chemo destroys your immune system, including the “bad guys” that cause the disease. Transplantation introduces good cells into a now pristine environment. The idea is that these stem cells will grow into healthy immune cells, thus eradicating the disease.
I do believe that this procedure will eventually be the accepted treatment for autoimmune diseases. (What will the pharmaceutical companies do??) I believe it is more than a treatment; it is a cure.
AnonymousNovember 17, 2010 at 6:53 pm
I am so, so, so happy to hear you are doing better. I’m through the first hoop – my application’s been reviewed and I go for evaluation with Dr. Burt mid-Jan. I never thought I would be looking forward to going bald and being chemo sick so much! But I am as I KNOW that part is temporary, but the rest of my life without CIDP is so, so, so worth it!
I can’t wait! But I also don’t want to get my hopes too far up in case they find I’m not a viable candidate.
Please keep us posted as to your recovery.
Thank you and thanks to all that went before you to give the rest of us hope.
November 18, 2010 at 8:31 pm
that’s a great thought : ) i hadn’t thought of that–but with auto immune related diseases on the rise—can you imagine the success of the pharmaceutical company that manufactures a successful drug for it!!!! they would be very rich and we would be very happy—–that’s okay i’ll take happy over rich any day–lol Lori
AnonymousNovember 22, 2010 at 1:58 pm
Linda, good luck to you! I hope you receive a favorable response from Dr. Burt. If you have any questions/concerns about the treatment, what to expect, how you might feel (I had NO nausea with the chemo), please feel free to PM me.
Let me know how it goes with Dr. Burt.
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