Shy

General General CIDP Discussion
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since joining have kept up to date with some posts, some not by choice.
sometimes i find this site so inspiring and useful and other times quite frightening and negative and do not want to hear what is ahead even though i know full well what i face again when i come out of remission! my family have refused to read information or take in what it means and i have to concentrate on day to day , month to month and don’t really share now,just with my gp and consultant but only see my consultant every 3/4 month at the moment.

have recently increased my azathioprine as my symptoms were getting worse again and it seems to have helped a little.

i applaud you regulars that blog often and find this so useful but i cannot make this that much more of my life than it needs to be and all consuming and all i think of, i try to carry on and be as normal as possible and forget as much as i can that i can crumble and be very disabled at any time! with such an unpredictable illness and an illness that is not understood and as yet curable that can be so rapid, we have to be so focused on the here and now, make the most of our good times.

I will still keep in touch dont get me wrong and to those of you this helps so much much please dont feel offended as i do appreciate this too so very much and do not mean in any way belittle this fab family, am just expressing some feelings and thoughts which is what this is for right ?

good luck and fond wishes to you all in your ongoing recovery/struggle xx

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Take good care of yourself.

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I understand. New to this, I have also found a wealth of information that is helping me in my journey, that otherwise did not have. Everything has to be in balance. This has consumed us for the last few month and we are really trying to figure out what the new normal is.

Wish you good health and all the best,

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I feel like that sometimes. I have had CIDP for 4 years now. In the beginning I was so frightened and worried all the time. I did not know how to cope or what my life would now be like. I came to this site daily and consumed all posts and tried to find out everything I could about CIDP. But it also petrified me because I was not experiencing all the debilitating symptoms as everyone on the site and I thought that would be me in a few months. My neurologist suggested that I do not visit the blog anymore as it is good information but it is also skewed toward the very sick. He told me that people who have CIDP and are not totally disabled do not visit the site as they find no need... they are going on with life and not obsessing about their disease. He said that for every one person that is totally disabled with CIDP there are hundreds of patients out living without horrible symptoms. So I only come back when I am experiencing a new symptom or find the need to talk. But for the most part I have continued down the same road as before CIDP. I have some obstacles to overcome that I didn't before CIDP but I am one of the lucky ones... my IVIG is keeping my symptoms a bay for now as long as I get it every 4 weeks. I don't want to think about the 'what if's' down the way for now. I guess I am just like an ostrich and I want to stick my head in the sand and forget as much as possible for now. I hope and pray that they come up with some new treatments by the time my disease decides to progress. So when I feel overwhelmed I don't visit for a few months and try to not let CIDP have me... instead I have CIDP. Good luck.

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One of the main reasons I read this site is because I can read real information about the effects of CIDP, not just some medical write up about the physiology of such.

However, after reading these responses, I have a couple things to say.

This forum is not only one for those that are very sick. My partner who has CIDP is up and around, walking and living. This disease is so rare, there is no way there is a 1 to 100 ratio of dehabilitated vs. non-dehabilitated forum users

Do you know what a relapse is, or even know that CIDP can relapse? What if the IVIg stops working and you have relapsing remitting CIDP? Do you know that you can become fully paralyzed in a matter of days? This is the kind of information only found in the forum setting. It is invaluable information; information not just for the afflicted to find.

Here is some more information that I have, and I hope it really sinks in.

Ivig is a treatment, not a cure. It is a MASK for the blood so that the body can go on, for as long as the immunoglobin floats around in the bloodstream. This mask allows one to believe that their CIDP is under control, because the quality of life has improved with it. But, this is wrong. The CIDP doesn’t have you, but you do not have the CIDP, either.

Auto-immune diseases that aren’t in a remission continue to attack the body. Who knows what determines when the body moves on to include other bodily systems, yet the determination is made, whether in a relapse or successful “treatment”. A common, secondary system attacked are the optical nerves - NMO. Thyroid. CNS. When this starts happening, what do you do? Your body is ever-so-slowly killing itself, yet the IVIg keeps you mobile and “independent”.

If you even have CIDP, you are that bad to seek out a cure, to be informed of what can happen, and to have a plan in place with your neurologist to aggressively put this disease into a remission.
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What should that plan be? I’m not a medical professional. Read what is working for that 1 out of 100. That is the information you must know.

Learn it, THEN go on with your day and life. My intention is not to bring doom and gloom, but to be REAL about this disease, and hopefully save some lives by educating people.

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tperri:

I agree. For me, I use this site for the wealth of information, support of others in similar situation, and do my best to balance my education with what I need to do to find the new normal, for my family and I. Had I not had internet access and to others sharing real information, I would not have pursued my diagnosis so aggressively. I was pretty sure time was of essence. I can't put a value to that or my appreciation.

I'm sure we all do our best to balance CIDP having a hold of us, regardless of the reality. Just like the disease, we all are different; so how that is achieved, varies. For me, I feed on information.

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I understand too, what you are saying... I have trouble keeping up (logistically) and sometimes feel like I don't really know what to ay but it is really good to have this support. Have a good day all!

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When I was diagnosed in November of 2014, my neurologist handed me a piece of paper with CIDP written on it and two web sites to check out. Along with the words that I must have infusions or a wheel chair and walked out of the room with my next appointment in three months. I checked out the sites and cried for 4 days. On the 4th day found this site, calmed down and benefited from others. What I love most about this group is the wealth of information the newly diagnosed are blessed with from the ones that have had the disease for years and are willing to share. I cannot express the appreciation I feel for these wonderful people.

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I understand the anxiety this site can sometime generate. I use this site primarily for one reason. I'm waiting for that post when someone comes up with a cure or a better treatment for this autoimmune problem. As i have experienced it is important to be involved in your treatment.Only my neurologist has any clue as to what I have (sometimes I wonder about him), my GP, and Rehab Dr are fairly clueless. While reading comments, one has to remember we are all different and the condition of everyone on this post is not the same. I don't make this site part of my world, i check it like email. if it looks interestng i'll read if i have the time, if not i'll check on it later. I take hope in the fact some are in better condition and some in there 70's(I'm 58), and thankful i'm not as bad off as some of the less fortunate that comment on this site. But, in General it is Good to be Alive!

I know it's hard to not think about your condition, but try and find something to do that will keep your mind occupied.

I hope the Best for you! God Bless!