Been a while..

    • Anonymous
      March 18, 2010 at 1:44 am

      ………..

    • March 18, 2010 at 7:02 am

      M,

      I’m glad you’re here. I’m glad you’re opening up to us. Please do post more often. Your story makes me sad. I can’t imagine going through CIDP without treatments. I went from running a 10K to a wheel chair in 6 months while awaiting a diagnosis. I did (and still do to a lesser degree) feel like a guinnea pig. But I do hope you’ll seek treatments.

      I do think CIDP is still in the rare category, of the docs I interact with, only 2 had heard of CIDP.

      I agree with your take on the pharms. I do wish they would develop a magic pill for us and would gladly pay an inflated price to cover their research expenses.

      Again, please do post more, we’re here.

      Gary

    • Anonymous
      March 18, 2010 at 8:15 am

      M, welcome back!!!

      I’m on my way out to PT, but I wanted to take a minute to confirm that I absolutely understand, empathize and definitely relate with your post. I’d become somewhat of a recluse, mainly as I was tired of explaining why I couldn’t do certain things or hearing “you just don’t want to do it”. In fact, it made me very angry and with the exception of a couple siblings, I stayed away from family events.

      However, I was blessed to find a “family” of friends, a few knew me prior to GBS and I met others post GBS. They eventually came to realize that I wasn’t “faking” as I hate, deplore, abhor asking anyone to do anything for me, regardless of how small.

      You sound like you can get around much better than me. Bike rides, picnics? Heck, if I sat on the ground for a picnic, we’d probably need EMS to get me up. ๐Ÿ˜€

      But, I’m rambling and this is your post. Sorry ๐Ÿ˜‰

      It’s sad that there doesn’t appear to be many strides made until/unless a famous celebrity is stricken with any of these illnesses.

      Please feel free to send a PM if you feel the need to chat, vent, etc.

      I wish you the best.

      Take care,

      Tina

    • March 18, 2010 at 9:24 am

      Hi!
      I sense urgency in your situation. You have to find a doc, just waiting is only going to make things worse. You mentioned treatments you have tried, over how long of a period? Did you do loads of ivig? how about ivig with steroids. Were imuno suppressants tried? Cytoxan is being used for some with good results. As well, several members are trying to see if they qualify for a stem cell at Northwestern in Illinois. You can search a member named Alice and follow to her other site to see what she has experienced or pm her. She will help you. You cannot give up, you have went from walking to a cane to a rollator, we can;t let you get to the next progression. Please try gather the stregnth to keep fighting. It is hard and almost always daunting, but we have to try. Keep us posted, and come back for support!!

    • March 18, 2010 at 11:29 am

      This disease is quite rare and uncommon. It’s so rare in fact that I can’t really explain to anyone what I have gone throught with my CIDP.
      This site gives me hope that if I had not improved with the Doctor I have now, I would try another Doctor and get other treatments. I have the greatest Doctor in America but if he retires or leaves I have already scouted around for others.
      Iam 71 and Diabetic as well. I take care with my diet and make sure I exercise. Exercise has to be something I enjoy and I don’t believe in no pain no gain. I had to start from scratch with some painful injuries to be as strong as I am now. Overdoing anything was a temporary setback, but little by little I started doing more and more.
      Just moving is the best anti-aging medicine available. After a long shopping bout or a walk on the treadmill my seotonin kicks in and I feel great.
      I was thinking that if I tried stem cell therapy I could kill two birds with one stone. As it stands now I am getting better and better and I don’t want to get worse or have complications. If one thing doesn’t work I’ll try something else. Whatever the next challenge is going to be I’ll give my all to conquer the doggoned thing.
      My Neuro told me to practice my balance and I do that now too. I got a book for Seniors about balancing to prevent falls and I am practising one exercise at a time. I doubt that I will be able to do the Yoga Balance Postures that were so easy to do when I was a Puppy. But I hope I can avoid a haphazard fall that many seniors have suffered. So…….That’s my story and I’ stickin’ to it.
      It was sure good to hear from you, because I think we have all experienced the downside of this affliction. This website opened my eyes to many ideas, gave me hope and I am grateful that I found these caring wonderful people who can relate to the complaints and confusion that we all need to express.
      God Bless You Noyoucant and please post often. I know you will see the day when your well-being improves.

      your well-being improves.

    • March 18, 2010 at 11:32 am

      This disease is quite rare and uncommon. It’s so rare in fact that I can’t really explain to anyone what I have gone throught with my CIDP.
      This site gives me hope that if I had not improved with the Doctor I have now, I would try another Doctor and get other treatments. I have the greatest Doctor in America but if he retires or leaves I have already scouted around for others.
      Iam 71 and Diabetic as well. I take care with my diet and make sure I exercise. Exercise has to be something I enjoy and I don’t believe in no pain no gain. I had to start from scratch with some painful injuries to be as strong as I am now. Overdoing anything was a temporary setback, but little by little I started doing more and more.
      Just moving is the best anti-aging medicine available. After a long shopping bout or a walk on the treadmill my seotonin kicks in and I feel great.
      I was thinking that if I tried stem cell therapy I could kill two birds with one stone. As it stands now I am getting better and better and I don’t want to get worse or have complications. If one thing doesn’t work I’ll try something else. Whatever the next challenge is going to be I’ll give my all to conquer the doggoned thing.
      My Neuro told me to practice my balance and I do that now too. I got a book for Seniors about balancing to prevent falls and I am practising one exercise at a time. I doubt that I will be able to do the Yoga Balance Postures that were so easy to do when I was a Puppy. But I hope I can avoid a haphazard fall that many seniors have suffered.
      That’s my story and I’m stickin’ to it.
      It’s good to hear from you, because I think we have all experienced the downside of this affliction. This website opened my eyes to many ideas, gave me hope and I am grateful that I found these caring wonderful people who can relate to the complaints and confusion that we all need to express.
      God Bless You Noyacant and please post often. I know you are going to see the day when your well-being improves.

    • Anonymous
      March 18, 2010 at 5:04 pm

      Hi Noyacant,

      Welcome back. I can relate to much of what you wrote, especially the issue with social isolation. It is one of my most difficult problems. People aren’t really able to understand and relate to me on a level with which I can actually function, especially because I look pretty normal. And I get too tired trying to explain and deal with it. Part of the reason I recently joined this site.

      Wishing you well.

    • Anonymous
      March 19, 2010 at 10:09 am

      Hello again,
      I apologize that I can’t really reply to everyone on and individual basis, so I’ll try to cover all with what I can muster, pecking away all to once. I can only stand to have this thing on my lap for a certain amount of time.. especially with these sore ribs. My awake time as of late has been relegated mostly to feeding and cleaning up after myself. Sleeping in an attempt to heal burns the majority of the rest. I have managed to get out on the porch for some fresh air and sunshine for a few minutes the past couple of days. Getting to the car or out in the yard for a walk, if you could call it that, seems a bit daunting at present. I get even more wobbly when outdoors, everything seems so big out there anymore.

      I’m a bit overwhelmed at all the replies and the sincerity you’ve all expressed. Something I’m not quite accustomed to. Acceptance has come to be all but non existent outside of my little world here on this old farm where I reside. Maybe a little background should be in order here. I currently live in New York, on an eighteenth century farm where a church had been built in the mid ninteen sixties. The priest and his family reside in the original farmhouse across the horseshoe drive about a hundred yards away. THe farm is no longer active aside from the chickens they raise here for the eggs. Can’t get these in the store.. so good! THe chickens can be comical to watch at times, pesky at others. They keep the insect and tick population at bay, so that’s a good thing.

      I have a little stand alone house here and a few quiet neighbors that live in the various other buildings about the little manor. It’s quite serene, even picturesque here in the foothills of the Shawangunk Ridge. I feel lucky to have found this place two years ago and had gotten a good vibe from the moment I first turned into the drive to see the place while anticipating a move from the depressive dump I then had. That was a hastened choice at the time since I just needed a place of my own once I had the funds to do so and was basically outdoors aside from the kindness of a couple of friends with room to spare at times. THe trunk of my car was my dresser for close to a year.

      Wildlife abounds here with everything from great horned owls and bald eagles, to foxes and coyotes and whitetailed deer, so many deer! And everything in between living in and around the woodlot and swamp behind my house. THe songbirds have just begun to return recently from their winter homes and I heard the peepers for the first time just the other night. Spring has sprung but more cold expected next week. I’ve not seen a robin yet but then again, I’ve not been out much.

      THis house was built for a retired general of the White Russian Army, who worked directly under the Czar. He was an artst and writer and spoke no English. SInce his passing, it’s only had one other tennant in eighteen years who moved when she had inherited the family home. So it’s never been a transient place.

      Most everything I need to live can be found just five miles out in a small town with a great, very clean grocery store and many other shops and services. It’s clean country living here, ‘though just ninety minutes from NYC. Mostly locals around here but quite a few commuters using it as a bedroom community of sorts. THe area is mostly woods and old farmland that has been split up and developed over the past couple of decades. It’s in the fringe of the old Borscht Belt of the last century. Many old resorts and bungalow colonies lie in ruins in outlying areas. Interesting countryside to explore by car.

      It’s a bit expensive to live around here but the conveniences outweigh the distance required to cover just to fetch victuals, upstate an hour or so west, where I’m originally from. I’ve not been up home to visit in close to a year now, ‘though my Mom has been down a couple of times to see me.

      I really have no one aside from dear Fr. ____ and his family. I had a good friend for about two years but haven’t heard from her in weeks now. We were quite close and communicated on a rare level. We’ve not seen one another in a couple of months. I miss her visits and the occasional outings we’d go on. The paintings she’d given me still hang on the wall. We’re still friends, just distanced now by circumstance.

      Now I seldom venture out unless I need to grocery shop, which I usually do about dusk or there after to avoid the traffic and crowds. I’ve grown accustom to parking next the cart shelter and using the cart to help me walk. Adaptation is quite an ominous thing.

      My mention of bicycle rides around the church manor was last year. I picked up an old school style Schwinn and modified it with some pretty rare, new old stock parts, chrome springer front end w/no frt brake and a Brooks saddle just for something to do. It’s pretty wild for a bicycle. Have to keep at least one death trap to play with! I bought it after selling my last motorcycle about a year ago. I was really into bikes for a long time. THose and cars were a hobby of mine. I’ve had many over the years. I don’t believe I could manage the bike at present.. why I’d said, “fall off bicycles together.” in my last post. I’d like to get back in shape to ride again. For now it looks good sitting in the room behind me. It fills an empty spot where I’d imagine the old general most likely had his easel.

      My former passtimes were classic car restoration and motorcycles. I had a 1500 sq ft shop that that I had built to spend my retirement in puttering away the hours. Now I have a huge pile of bike and car parts, garage equipment and tools stuffed into my Mom’s neighbors vacant house. Perhaps now to be someday rendered auction fodder. I hang onto it just for the sake that it’s a lifetimes accumulation of my, well, things I suppose. My old car went back to my cousin who had originally built it. His son now has it in pieces, working to restore it once again to better than new condition once again. It’s second resurection. I could no longer stand to see it rot in my Mom’s yard where I’d put it when I’d moved out years ago. It was next in line after a client’s car I had to farm out for completion.

      The grieving process has been long and seemingly endless with the loss being progressive and almost constant over the past decade. It’s draining, soul wrenching. I know many, most likely all of you can relate.

      I’ve not had any treatment for my cidp, aside from the cymbalta I was perscribed by my late neuro. I stopped taking it years ago, shortly after his death. It stopped working and the side effects were literally killing me. I absolutely hated the stuff. Anti-depressants don’t seem to work on me. Nothing can make me feel that things are all okay when I know in my heart that they are not.

      IVIG wasn’t an option for me, since my neuro didn’t want to open my immune system to the possible ravages of ten thousand donors per treatment. I whole heartedly agreed. Other factors were considered as well in his decision to not take that route. THe particulars I can’t recall. Steroids are out of the question. I know what the long term results are and don’t want any part of it.

      Once I recover from the last couple of recent spills I’ve taken and get some of my strength back, I want to see another neuro. Again, my trust issues hold me back. My last had been protecting me from the cutters at Westchester, who seemed all to eager to get their hands on me while attempting to circumvennt him. Was suspect of them wanting to go down in the annals of a medical journal. I’ll pass on that particular fifteen minutes of fame. In short, they wanted to pop my top and play with my jello. To hell with them and their self serving at my expense attitude. I refuse to be a lab rat. I’d rather go the the vet and be put to sleep.

      WIth spring finally being here and warm weather teasing us, I plan to get outdoors more often and try to get my strength back to the point where I once again feel somewhat functional, human. I don’t expect to overcome the fact I’ve become so intolerant of constantly trying to explain to others why I can’t join in on their reindeer games, it’s exhaustive and senseless since they haven’t the means to even scratch the surface of understanding. I’ll just have to try and remain vertical and taking on nourishment, hoping there’s something out there worthwhile other than living in the moment, existential. Something to look forward to is a very important thing to me. I just need to find that something, somehow, somewhere.

      THanks so much again for all the kind words and understanding. You’re all such a great group of folks. Please try to understand that I can only take so much of this to a spell and my posts may tend to be iinfrequent at times. I’ve only so much energy alotted and am trying to scratch and claw my way out of this pit I keep falling into. I know you’re here to help. That means a lot to me.

      Best,
      – M

      Slightly edited in respect for privacy of others.

    • March 19, 2010 at 3:32 pm

      Hi M,
      If you fear ivig and oppose steroids, other options may seem even less a reality. IVIG is relatively safe, any drug these days has its risks. But for the most part it is safe. Incidentally it is 20K donors to make a dosing. You have to do something or you will just continue to decline. There is a drug low dose naltrexone that another member brough to our attention, it seems like a possibility and has no real side affects that I can find, still searching, so if anyone finds any please can you let me know? There is the worm theory, but it is illegal in the states. While people with crohns, ms, lupus have gone into remission with them, it is not sanctioned by western med. So we will wait till it is legal, maybe soon, there are far along in the trials, already working with pharma.

      Until you decide to do something, the honest truth of it is that you are going to get worse. Please find a neuro as soon as possible and at least explore some possible treatments that you would consider.

      BTW I am jealous of where you live, it sounds like something out of a novel! Enjoy the Spring! Keep us posted

    • Anonymous
      March 20, 2010 at 7:22 am

      Hi Noyacant,

      Wow, it sounds like you live in a beautiful place! How nice for you.

      I had the same worry about IVIG that you did, in terms of what will I be exposing my body to that is unknown from all those donors. In the end I decided to go ahead anyway. My CIDP was left undiagnosed for so many years by the doctors that I had gotten to the point where my breathing was failing. I could not walk 5 feet without a “breathing attack” occurring, which caused me to drop to the floor to rest until it passed. It made the decision to go ahead simpler for me, since I was pretty sure I would go into complete respiratory failure within a few years if left untreated. Thankfully the IVIG has helped improved my breathing. My main point here, is consider getting treatment, you don’t want to wait until it hits your autonomic nerves, if you can help it.

      Glad you wrote back and shared more with us. Hope you enjoy the warmer weather in your beautiful home.

    • March 20, 2010 at 1:57 pm

      Noyacant,
      Did you recieve the email from the foundation yesterday? It is about a web seminar on March 31st regarding how ivig is made etc. If you did not, call the foundation to get the link to sign up. It might help to calm your fears about ivig.

    • Anonymous
      March 20, 2010 at 2:53 pm

      No, I didn’t rec’v an email. Thanks for the heads up ‘though.

    • Anonymous
      March 20, 2010 at 3:31 pm

      M,
      Nice to meet you.
      Your post was so descriptive I felt like I was reading a book and getting familiarized with the location and characters before reading the story.
      Sounds like a very beautiful and peaceful location.
      Best wishes
      Shirley

    • Anonymous
      March 20, 2010 at 4:47 pm

      Hi; Shirley,
      Thanks for the warm hello and kind words. It is nice here, especially today with temps in the low seventies. Been nice over the past few days now. Feeling pretty low about not being up to getting out to enjoy the fine weather and no one to do so with. No where really to go anyway. Still holed up, licking my wounds from my spill, a week ago. Feeling better as days pass and the slivers of sleep I can manage throughout. Thankful for the peace and quiet here at times like these. Had to go and say that.. now one of the roosters is blowing his horn out in the dooryard. Where’s that red tailed hawk when I want him? I hate that rooster. Was wishing he was one of the casualties that occured last week, but no such luck.. horrible thing what he is. Ain’t I awful? Time to go out on the porch and shoo him away if he don’t cool it.
      Best,
      – M

    • Anonymous
      June 8, 2010 at 6:23 am

      Rather than starting a new thread, I thought I’d just post to this existing one and hope that it may get enough attention, at least the mutually beneficial parts, be of some help to others here. First off is the main reason for my post. I’ll try and make a long story as short as possible here, so please bare with… Not too awful long ago, in one of my weak moments of desire for human contact, I’d posted a brutally honest ad in a venue which will remain nameless. As expected, there were few responses.. two to be exact. One in particular, the second had piqued my interest with her mention of something that may very well give me back some of my former self, maybe even make me well. Not to mention, she is a very attractive, caring, intelligent and talented individual. Being the skeptic I am, I answered her message and we’ve been corresponding since. Complications have kept us from actually meeting, but that may change with time.

      Her initial intent seemed to be her wanting to help me. Wow, a perfect stranger wanting to fix me right out of thin air! Could it be? She seemed so sincere and as I read on and talked with her a bit, I was drawn closer by her personality.

      She’s been struggling with the immunological after-effects of undiagnosed Lymes Disease for a couple of years and suffering with symptoms similar to many of mine [ours]. Recently, she’d found out about LDN [low dose naltrexone] therapy, a GP and neuro that will ‘off perscribe’ the drug for her treatment. SHe’s since been on it for a matter of about four months and has begun to see some marked improvements in her health.

      She had suggested that I read a book written by a woman that has had much success in helping her husband who is stricken with MS to get ‘better’. THe book is titled: ‘Up The Creek With a Paddle’ by Mary Boyle Bradley. I bought the book and am a little over two thirds through it and am quite compelled, if not convinced that I need to push on and further investigate this thing. Her words and personal advancements from the treatment are prompting me to do so.

      The drug is cheap, so the treatment isn’t a problem to manage even with my excellent health care plan. I’m fortunate and thankful there. THere’s virtually no ill side effects to boot.. bonus. THe biggest hurdle seems to be in finding a doc and or neuro to run with this line of treatment. SHe has done so and they’re logistically close enough to make this a breeze for me. Well, enough of a breeze as my accomplishing anything these days.. like a trip to the grocery store, only a little farther drive and no lugging packages. Great! I’ve got the doctors names and plan on making arrangements soon. I’d really like to meet her before hand but situations and complexities on her end may be stalling, at least slowing the process. It’s always something, but not insurmountable by any means. So there’s that.

      Another bright spot has shown up along with the summer.. a neighbor lady, who moved in to the little duplex across the drive, next the vegatable garden last fall had left a note in my door last spring stating she wanted to meet me but has not wanted to disturb me and included her phone number. I called her the next day and we talked for some time. SHe seemed very nice and offered to do or fetch anything I may need since she was out every day for work and drove by everything on her way. Me, being the stubborn independent sort I am, thanked her and held off until just last week when I’d ran low on Camels and didn’t feel well enough to drive into town. She gladly agreed and showed up as promised. I paid and thanked her as we introduced ourselves and shook hands. I don’t recall shaking her hand but she say’s so.

      Up until that point, our contact was only a seldom made phone call to simply keep in touch or check on one another during a storm or power outage. My phone rang the other night at one thirty AM. Considering answering with, ‘This better be either real good or real bad.’ I said hello.. t’was the neighbor lady on her way home from a girls night out and apparently thinking of me. We chatted until she pulled into the horseshoe drive and her lights glowed in my glass entry door making a fitting shadow puppet stage of the adjacent, white closet doors. We’d left it at one of us calling the other back next day and making plans to do something.

      Next day, day before yesterday I gave her a ring and asked if she’d like to go along with as I needed to do some grocery shopping. Dinner, afterward at the diner my treat for the pleasure of her accompaniment and help. It was nice and she made a pleasure out of a previously much loathed chore. I think she was impressed with the way I’ve come to accomplish my shopping routine without the use of my cane at the store. Too easy and expensive to leave my cane in the cart, as it’s happened twice before while distracted. It’s sorta dark in the lot, adding to the possibility of such. Luckily, both times I’d gotten it back with a flying trip back there. Good thing it’s only a six mile drive.

      She’d called me from work yesterday morning and asked if I’d be interested in a wheel chair if she brought one home. Seems she has a friend that works in a medical supply place and mentioned a perfectly good, high end wheel chair they had and were going to throw out since it’s seat cushion was missing. It was a former rental, sanitized and bagged. I agreed of course and she went on to say how, now we can get out and do some things together without my fear of falling. And it wasn’t even my birthday! And it’s chrome and shiny!! SHe had a way of taking the sting out of such often painful choices forced upon some of us.

      I’ve been agonizing for months now over getting a power chair or scooter and have checked into a couple of these, “No out of pocket cost to you.” jive outfits only to find out the jumping through flaming hoops of barbed wire will now begin. Big surprise there. So after abusing enough of these people over the phone to satisfy my mean streak, I pulled the trigger and ordered one, night before the nice neighbor lady brought me home a manual chair. Burns me up that this thing is costing me more than some perfectly good cars have in the past but it’s better than rotting in this little house, day after day. At least now, I’ll be able to don my Darth Vader looking, Simpson Street Bandit racing helmet, left over from my biker years and chase the chickens around the manor. Wouldn’t that be something?

      So it seems, even an isolator such as myself is sometimes bestowed with these little miracles and angels that bare them.. So afterall, there is more than cheese at the end of the tunnel. For these kind souls, I am truly grateful and blessed to have them in my life. How fulfilling!

    • Anonymous
      June 16, 2010 at 10:11 pm

      Noyacant…I think maybe it should be yesyacan. I enjoy reading your posts and happy things are looking up.

      Stacey

    • Anonymous
      June 17, 2010 at 9:23 am

      I am glad you are finding some little miracles and angels. We all could use some of those! ๐Ÿ™‚