When posters start doing well- they split!

That is why i haven’t had my husband reading posts. I hope to still be updating on his condition and at least post an exit post at some point in time.

Yesterday i was in tears driving to work. He was able to move his foot/ankle just a bit. That is the first movement in the foot in 6 or 7 months. He is an avid skiier, no actually he lives to ski, so i am so hopeful he will recover enough to ski.

I would love to see posts from folks who mostly recovered. Hope is hard to keep in ones heart when recovery goes from days to weeks to months to years.

I do not know if I classify as one who found “a solution” and “get well”. I have been on IVIG and plasmapheresis for 17 years with ups (being able to mountain hike 12 -15 miles) and downs (at year 13 spending 8 weeks in hospital 3 of which were in ICU on a ventilator) and now doing pretty darned well.

I read the posts regularly. I do not often post as I find anything I might say has already been well said by some one.

I suspect there are a lot of folk like me out there. We read and comment when we have something to say. We have not left. We know the gleeful and teary moments when a step forward was achieved and we wish the same for all. When we have something to contribute we will do so.

We are here.

I hope people realize what their posts do for people like me just starting down this road. I don’t know what I would have done without this forum!

This forum has been so helpful for me. I can come here any time to read and post. I can’t even begin to say how thoughtful the many many responders are.

My CIDP goes up and down with IVIG but I keep trying.
The forum is overwhelmingly positive and when some need validation it’s here.
Our strength, sharing and support is what helps all of us. :p

Well, I belong to another category of the “splitters”. I am not really doing well but have given up hope of ever getting better and decided to stop dwelling on this disease and its hows and whys. I’ve done a lot of research a few years back and shared what I found. Old-timers here probably remember me. I have a variant of CIDP that is sometimes called anti-MAG IgM neuropathy. It started in 2001 and reached it’s peak in 2009. 2 years of treatment with IVIG and 2 more with Rituxan have been unsuccesful. I have been in a power chair for the last three years with totally numb feet and partially numb hands. There is no pain. I can walk very short distances with a rollator and am doing water aerobics on a regular basis. I learned how to live with this disease and am trying to enjoy as best as i can the few years I have left. I am 78 years old. Wishing everybody here the best.

pattysoo—I can sympathize with your husband, I miss skiing so much,its the rush of speeding down the mountain, the wind in your face–you never realize how much you miss something until you cant do it. 🙁 I live between two mountains having to see the ski slopes all the time, to make it even worse.
yes it would be nice to hear more of the positive posts from people who have beaten the cidp. I can see why people don’t post after they are better—because they are out living their lives!!!:) I enjoy the posts describing the recovery process, what finally worked etc, and how much function was regained.. Lori

The forums and the support given helped me to deal with GBS. Great support from members that understand what we go through.
We have lost members for different reasons of their own. Some of those members read the posts and do respond at times.
There is still great support here and new members getting the support will be able to help new members after them.

Pattys00
Great news that your husband moved his foot/ankle just a bit. That bit of movement gives him encouragement for the future.

Shirley
GBS 2007

Norb I followed your story, and I’m sorry that the treatments didn’t work. Glad to read that you are doing water aerobics–the fight is still in you. Sometimes they say some of these autoimmune diseases tend to burn out–hope that happens with you. I have MS and I find that is somewhat true as I age i.e. less flare ups and the flare ups aren’t so bad as when I was younger.
Laurel

I don’t post like I used to, but like Norb I have had a severe case of CIDP for almost 10 yr. now & I am as good as I am going to get. I live 15 miles from the largest ski resort in the Midwest & we had season tickets there for years. I could only dream of downhill or cross-country skiing again. Actually, I do picture myself skiing in my dreams. I also loved skating & playing tennis, have even thought of trying wheelchair tennis, but my arms aren’t that strong. At our condo in Florida I will be walking right by the brand new tennis courts on my way to the pool area & clubhouse, that still hurts even after all these years. I hope to buy a scooter to keep down there for the winter months, so I can at least go with my husband on his walks.

As far as success stories, remember that the majority with CIDP get pretty much back to normal with various combinations, & lead busy lives working, taking care of families, etc. There is really no reason for them to come here. For those of you looking for answers, when you get back to your old self, you will not feel the need to come here either. And I believe that is a good thing.

God Bless the Old Timers…
peace and strength to you.
I come and go, the reading here can be depressing if you let it.
When I hang around it is for for inspiration to others.
Keep the Faith.

soapy

[FONT=”Microsoft Sans Serif”]Jeanbell,

You are so right– it makes it harder to know how many of us are doing well in the big picture as generally, I think it’s fair to say that a disproportionate amount of sicker people would post more regularly. And as others on this thread have pointed out, it’s natural– both to post more when you need more support and to post less once you’ve moved on more with your life.

When I 1st got dx, I remember reminding myself that there are probably many people out there that are doing quite well and don’t bother to show up here– it gave me hope that not all of us had to “be so sick, as it were.

I am doing well and still feel a sense of commitment and belonging. And I know many others are in the same boat. We are among an exclusive group I guess 😉 [/FONT]

I don’t post anymore because I’ve been in a remission or a cure for nine years now and I just can’t relate anymore to all of you who are active.

All you have to do if you remember the name of an oldie is find their name or post you need help from an oldie. I still browse and if anyone said I’d like to talk to codystanley I’d respond.

sounds like you are in the same spot as me right now. I am still in the process of ivig but am not feeling that it is working as well as i’ve read it has for others on here. i was diagnosed in june of 09–so have definitely given it time. my next step, its looking like December will be plasma exchange.
my dr has suggested rituxin if the ivig/pe both fail. Im thinking if im going to end up doing chemo–why not just go for the sct???
It is a confusing disease!!! I think from reading the posts of people who have done the sct, is that it has worked–and they wished they went for it sooner—i dont want to wait too long and be feeling that same way—I am 47 so okay agewise for sct. my walking is affected from the cidp, slower and bad balance, but am able to walk independently. arms/hands not affected. i do not want to wait to get worse before getting sct. I think if i fail another treatment (plasma xc) i might be a better candidate??? But…after reading the rituxin info–it looks like almost the sct benefit, just slower ?? lori

I don’t post anymore but I’m doing OK, not great but better than when I was on IVIg. I do want to offer myself as a resource for anyone considering subcutaneous Ig though. I’ve been on it for about 19 months now. 🙂
Julie

It’s true that I stay away for months at a time. My GBS is nearly gone and I can do all that I could before. My current exercise routine is 2 to 3 miles on a elipto bike, it simulates joging without any impact on the knees.

Residules, I still feel very slightly numb in my feet, but the vibrational sensations are gone. At least they felt like vibration from my stand point. Also when I get novacaine at the dentist on one side, my cheeks, lips lose complete feeling on both sides.

I’ve being using alternative medicine that supports the immune system and appears to treat this autoimmune disease. Being a vega has helped me recover. Meat, sugar and gluten require a lot of energy to digest, energy that cannot be used for recovery.

I do stop in now and again.

Take care all,

mark in new york.

The scariest tme for me was when I first became aware of what I had. Then I found someone willing to share and directed me to the forum. Through the forum I have found the knowledge and comfort to be able to deal with what I have.

I have never met another person (outside of a meeting or convention) who has CIDP. Without meeting others here, and other forums, it wold be harder, much harder to deal with all of this.

I wish I would be able to comfort as many who have comforted me, and those who have shared wisdom have helped me deal with some why’s.

After that it is up to me how I handle my situation.

I hope everyone finds the spot where they are comfortable with where they are and have a focus on where they are going.

Dick S

I haven’t written in a while either…but i haven’t totally recovered. i did get a little better after my first round of ivig but it was 3 weeks afterward so i really don’t know if it was the ivig or just my body naturally trying to heal. my forst ivig was really hard on me…i did get meningitis…it was awful. i have a whole new respect for the word migraine! i also developed this weird lump in right between my neck and shoulder that almost landed me in the hospital but they wouldn’t admit me. they checked to make sure i didn’t have a clot or bone infection then dropped the ball…. i just started my 2nd tx today but am getting a very small 60 gram dose. even my first round was only 1/2 a dose. i’m really frustrated with my dr. — he claims there is no difference between giving 1 gram or 2 grams per kilo…. but i can’t help but wonder if my response would be stronger if i had a full dose.

this forum is great. so many caring and knowledgeable people. i just haven’t had any great news to chime in about and still not even certain that what i have really IS cidp….

[QUOTE=soapy]God Bless the Old Timers…
peace and strength to you.
I come and go, the reading here can be depressing if you let it.
When I hang around it is for for inspiration to others.
Keep the Faith.

soapy[/QUOTE]