disorder vs disease….
November 24, 2008 at 12:02 pm
I have a question that has been bugging me and I am hoping someone can shed some light on it for me.
Okay, is GBS an autoimmune disorder or an autoimmune disease? and what is the difference? I sometimes read about things you shouldnt take if you have an autoimmune disease and would like to know why. Does this include GBS? And if it does, does that mean that the problem is still in us and will never go away and could pop back up any time? I am still adding to my knowledge and experience bank, so any and all ideas and info are greatly appreciated!
November 24, 2008 at 12:10 pm
My honest mom opinion?! I really do think disease or disorder is used synonomously. Honestly, doctors, abstracts, mayo everyone seems to use both of the words. Frankly, sometimes I do not even think docs always no the difference. The fact is gbs or cidp or ra or ibs etc. are all autoimmune, the only difference is gbs is “supposed” to be done after it is over, is it? Don’t the residuals flare, don’t the residuals get worse during cold season? So technically it is still active? I guess no one will ever know? it is too confusing.
Dawn Kevies mom
AnonymousNovember 24, 2008 at 2:29 pm
Hi Lori, If I’m not mistaken, GBS is a syndrome, meaning there is no one test for it, it is made up of more then 1 symptom, there is no cure for it. Disease, there is a test for and treatment and in most cases a cure. Disorder, is similar to syndrome, no absolute test, but is treatable and no cure. Now I’m not for sure on this explanation, might have it mixed up some. To me its all the same, you got it, you treat symptoms and you still deal with it for the rest of your life-my opinion. Take care.
AnonymousNovember 24, 2008 at 5:16 pm
[QUOTE=angel2ndclass22699]Hi Lori, If I’m not mistaken, GBS is a syndrome, meaning there is no one test for it, it is made up of more then 1 symptom, there is no cure for it. Disease, there is a test for and treatment and in most cases a cure. Disorder, is similar to syndrome, no absolute test, but is treatable and no cure. Now I’m not for sure on this explanation, might have it mixed up some. To me its all the same, you got it, you treat symptoms and you still deal with it for the rest of your life-my opinion. Take care.[/QUOTE]
I agree there are many differn’t explanations. but that is only because no one knows how to classify or explain. But because it is Technically classified as a Syndrome and not a disease makes it really hard to get dissability. once again governmental tape. we can bailout all the fat cats in the banking industry but cannot bailout our family and friends in need of finacial assistance to live and get health insurance
November 25, 2008 at 12:57 pm
thank you for all the input.
I know residuals flare up…but I see that as just that, a residual of something that happened. Like soap scum or removing the finish from a piece of furniture after using a harsh cleaner, does that make sense? Since it is the aftermath of what happened to us, I don’t see that as an indication of GBS still being with us. Now, like with CIDP, if it kept attacking I could understand that it was always with us. This is why it is so confusing for me.
I take supplements based on the anti inflammatory diet. I would like to add Astralgus to it but it says not to take it if you have an auto immune disorder. But, if I [I]had[/I] GBS and am healing or left with residuals, that means my body has dealt with things and did whatever it did and has gotten over it so to say. So does that mean I no longer have an auto immune disorder? OR am I tagged for life and have to worry about my immune system raging another attack in some way shape or form? I have read we [I]shouldnt[/I] take immune boosting supplements, I have read we [I]should[/I] so we can keep our system up. I take them anyhow because I want to avoid colds, flu, etc. or at least be able to deal with them armed with a little strength to get over them quickly or at least only have to deal with a slight case. Anyhow, so how do we, as victims or survivors of this devastating syndrome, classify ourselves? Do we or do we not still have an auto immune disorder?
Sorry if I come across as any thing but just looking for a box to put this in. But, it really is confusing. And I certainly don’t want to do something to cause more problems to myself or cause GBS to come raging back.
ps…yea a bail out for those of us who, thru no fault of our own, need some help, would be nice.
AnonymousNovember 26, 2008 at 7:14 am
Hmm! That is a tough question! I know when my lupus was in remission one time and was not having to take meds for it, I was considered not having lupus anymore by one doctor. Yet all these recent doctors at Duke told me that I had lupus all along. Doctor told me once you have Lupus you always have Lupus. I guess this would be the same for GBS. Since you have residuals then the disease as far as the worst part is gone but you still get residuals. So that means you still have an Auto Immune Disorder. When having surgeries, you have to tell the doctor’s and nurses your past history and diseases. Meaning you have to tell them you had GBS. So some things with GBS might cause residuals to act up! That is what I would assume! Just like Cancer! Once a person has cancer which is also a disease but too an Auto Immune disorder. A person can get cancer free but has to constantly be checked to make sure they stay cancer free. Some people end up getting cancer again!
Very interesting subject! Happy Thanksgiving! Hugs
AnonymousNovember 26, 2008 at 1:26 pm
Lori, in my opinion, we still have an autoimmune disorder. Kinda like hypothyroid, it can be controlled for life with meds, but you will always have it no matter how well you feel. I think residuals are there because the recovery wasn’t completed fully-back to normal. I would check with your dr on using supplements, since not enough is known about gbs/cidp, it should be looked into carefully. You definetly don’t want to start something raging inside your body, waking up the beast so to speak. Maybe the gbs people who had it many years ago, but still have flare ups of residuals can offer more answers.
AnonymousNovember 26, 2008 at 9:51 pm
Happy Turkey Day everybody! 😀 😀 😀
OK so, the way I understand it from the Kiss principle (Keep It Simple Stupid), a disease is something you can catch from somebody else. A disorder is something that is always inside us and can be set off from external problems. GBS starts with an event (who cares what?) that causes our immune system to turn on. For whatever reason it goes into overdrive and goes after our own peripheral nervous system. That’s my story, and I’m sticking with it!
AnonymousNovember 26, 2008 at 9:54 pm
Hi All: As I understand it, GBS is an disease you have for a time and then it is gone. The reisduals of pain, fatigue, paralysis are due to the damage the body received during the intensive period. Nerve damage and perhaps damage to the immune system are the culprits for our residuals. You do not have GBS any longer but live with the damage it did to the body. One neurologist told me that it is hard to imagine the hit the body took during GBS but it was severe. It is therefore not right to say we have GBS or even an autoimmune disease now, only the on-going effects of one. CIDP on the other hand is a chronic conidtion that continues though it can go into remisision. Unlike GBS CIDP can continue to cause nerve damage for long periods of time unless treated, while GBS, despite resiudals, does not cause further nerve damage once it is over. Jeff
AnonymousDecember 2, 2008 at 7:20 pm
it is all semantics. i tell people i have gbs whether you believe its gone the affects are still with me. i am still numb from the chin down and wear afos walk with crutches and a cane. I have already had one “flare up” after the flu and just getting over another bout of intestional issue that seems to have brought back the numbness. apppearantly this may happen every time i get sick so GBS is still active in my body.
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