Wow

Anonymous
August 23, 2011 at 11:48 am

Just got a call from Chi town. They are going to stop the Rituxian infusions, and wean off the prednisone. See if I can soar like an Eagle without it.
Keep the faith, Strength a peace to all.
until then..

soapy

Wow!!!

Anonymous
August 3, 2011 at 10:42 am

Selahsmom – this is also my hope. This is a tough disease and I cannot imagine having my child go through it – I’m so sorry. But I truly hope Dr. Burt’s research gets accepted sooner than later. On my “mobilization” day, 3 others were also there – 2 with MS, 1 with CIDP/Sjogren’s (me) and 1 with Lupus. The word is getting out and a lot of people with a wide range of autoimune conditions are here in Chicago at various stages of this process. It is so exciting! CIDP is in clinical trial phase I/II, so everyone here for this gets the same protocol. Another woman just got here that has CIDP and RA, John C just left, Tom got here yesterday for evaluation, Kevin’s coming next month … and the list goes on!!!

However MS is in clinical trial phase III and so there is “randomized” trials. One of the ladies here went through all the chemo last year, but did not get back her stem cells … she is now worse, they’ve moved her out of the “control group” and she is going through it all again. This time she will get her stem cells back.

This is one of the reasons I wanted to go through sooner than later as, at some point, CIDP will have to move to phase III/randomized trials before it can get to the public. I feel so very fortunate to be here in Chicago and a part of all this …

Wow

Anonymous
February 15, 2011 at 11:14 am

100 PLASMA XCH!
AND, FOR ME, TYEY WON’T DO 1?
4 YERS AGO I HAD A TETINUS BOOSTER (DR HAS NO RECORD OF IT)

ANYWAY, a eweek later my hands wentnumb, they suspected Folate Deficiency, 3 months later I was falling, often.

Short story/long, too long on Prendisone, 2 years on CellCept, I’m gettiing weaker and weaker- while my Dr (Cornblath-Hopkins, internationally known for treatment of CIDP) says he’s happy w my progress- meanwhile I’m on disability, hemorraging money and not able to do chores around my place?

ANYWAY, I gues the MY question is how do you get “them” to try something different???(- it takes 4 perscriptions to get me to sleep (nerve pain/”buzzing”) Ehat I’m “getting” , in so msny words- is I am still walking, can still grip @ 100 psi- So should I be hsappy?

Anybody else have trouble swallowing- like food is dstuck half down my esophogus?

Anyway, PLEASE keer us posted on the Stem-Cell thing- I’ve read some encouraging things from a Dr Peter Calabresi on MS. . .,

God Be With You

0

wow

Anonymous
January 12, 2011 at 7:19 pm

that’s all i can say…this report is so scary. ihave bcbs and i haven’t had a problem (knocking on wood while hopping on one foot for good measure).
i was just telling someone the other day exactly what you said about how i have been paying into my insurance for years and now i need them.
feeling like a cow? pleaase!!! i am a balloon because of predisone! i hate that necessary evil!

wow

Anonymous
November 22, 2010 at 10:58 am

i have finally found people who experienced the same thing as me. I was 30 weeks pregnant when i was diagnosed with CIDP. i was in the hospital from then on until my son was born in may. i lost 60 pounds. he was born a month early because i formed HELLP preeclamsia.
he is 6 months old now and developing well. we were all nervous about withdrawl from the meds i was on. he was fine.
we were both tubed after delivery and spent time in the NICU and me in the ICU.

ugh what an experience. i was bed bound for the first three months and i am finally walking with afo’s and back to work.

i worry about his development but the peditrician’s don’t seem to be concerned. he’s just perfect!

Wow…

Anonymous
November 14, 2010 at 2:32 pm

Liz, I am so glad everything worked out for you with the wheelchair!!!
Must have been some nerve wracking moments and panic.

I hope you have shared your thoughts on the symposium elsewhere, I just haven’t seen it yet, if so.
Also, i sent you a PM.

Thanks,
jdunk

Wow!

Anonymous
November 11, 2010 at 9:47 pm

^^ Now, that’s impressive treatment!!

I’m sorry to hear he is struggling so much still, but recovery does come slowly and every BODY is different.
For me, it took several months of IVIG before I saw much improvement in my paralyzed arm/hand.

Hang in there, thanks for sharing,
jdunk

wow

Anonymous
November 5, 2010 at 7:56 pm

Love to hear what is going on. Wish we were there but hard to make it with a 4 year old. Please keep us posted. Jealous over the Lewis thing.

wow

Anonymous
October 14, 2010 at 4:08 pm

I cannot imagine being pregnant with this. Bless your heart. My daughter is 4 years old with cidp and has had it since she was 2. She went a long time w/o tx and finally was put on weekly ivig until she returned to baseline and then spaced to every two weeks. She is now at every 3 weeks. She also has arthritis as her cidp was brought on by a virus. What kind of tx have you received? Please tell us more. Pamela

wow.

July 23, 2010 at 3:17 pm

Well, I wish you were right, but unfortunately not. I have completed all my testing and doctor visits at the Mayo clinic with no answers. After another EMG, I was told by the Neurologist and the Rheumatologist here that there is NO WAY my symptoms are related to GBS in any way, nor do I have Fibromyalgia or any other nerve or muscle issues. I am headed back to Seattle, with yet again, no answers. Because my ACE levels are elevated, the only thing associated with this is Sarcoidosis, but because my chest xrays look normal, I’ve been told that there is no need to dig any further into that.

So, I walk like a 90 year old woman, my legs shake like a leaf on a tree, the pain in my legs is so excrusiating that it requires pain meds every 4 hours, but because my tests come back normal…guess what…I’m normal. Wow!

The only thing I am walking away from here with is a prescription for Amitriptyline (Elavil), which, I’ve been told is for depression. Good thing because I am certainly depressed now. Another wow.

By the way, yes, I have tried supplements and all the other homeopathic junk…nothing.

So, I’m headed home with an empty wallet and a prescription for depression…yet another and final wow.

Do not know where to go from here. I am more than sick of doctors and their by-the-book mentality. Ugh.

Wow!

Anonymous
April 21, 2010 at 3:50 pm

The mere thought of what’s happening to me scares the bergibbers out of me. Some days I choose not to read “posts” because the scare and often temper my hope. Currently, I have the dreaded “drop foot” shuffle and fuzzy feet. I still push my mower, walk my dog and play golf. My looking glass is hazy right now. Thanks for caring.

Wow!

Anonymous
March 31, 2010 at 10:18 am

Have to get to a meeting, but wanted to post a few things before…

As to my symptoms, current status: I’m probably grasping at straws here, because no, I don’t have a dx yet, other than “Peripheral Neuropathy of undiagnosed origin”.

My symptoms are increasing…and are as follows:

*Decreased sensory input in my lower legs…basically the textbook “stocking” pattern. Very little temperature sensory input…everything feels “lukewarm” in my lower legs…even “scalding” water.

*Fasciculations: They are getting very bad, especially in my arms and hands, and have been observed by my GP during visits. I’m more concerned about what feel like fasciculations in my trunk area, especially my lower abdomen.

*Pain: The pain that radiates from my Brachial Plexus region, down my arms, into my wrists and hands is, at times, excruciating, even though I’m on 300 mgs a day of Lyrica. Opiates seem to do little with this pain when it is at its’ worst.

I have not had a recent LP; for some reason, everyone to date has seemed to want to rely on the results of one from nine years ago. I’ve had trouble convincing anyone to repeat this test.

I’m really surprised that none of you are familiar with the use of Tricyclics for nerve pain. I’ve seen a LOT of websites, like the one posted below, that say they are one of the first choices in dealing with nerve pain.

[url]http://www.mayoclinic.com/health/pain-medications/PN00044[/url]

[url]http://www.ncbi.nlm.nih.gov/pubmed/18331804[/url]

The latter of those two links states, “Tricyclic antidepressants are among the first line treatments clinically recommended against neuropathic pain.”

The reason I started wondering about Celiac and/or Candida is that I’ve also had chronic sinus problems, requiring two surgeries to date, and I’m looking at another this spring, unfortunately. My neuropathy all started after my last surgery, last spring. I’ve had several occasions where I’ve had to take multiple AB courses, over a period of six months. For example, last year, before my sinus surgery, I was treated for a chronic sinus infection for over six months, receiving 4-5 different AB’s over a six month period. This can really screw up your gut, and has at times caused episodes of colitis, etc.

I was wondering if my chronic sinusitis could be caused by an allergy, so I started doing some “googling”…and found that Celiac’s Disease can, and often DOES, cause “muscle cramping, neuropathy, back pain, weakness and pain”, etc…many of the symptoms I’m having, and that others report before being diagnosed. I’ve also read that Celiac’s is considered to be grossly under-diagnosed in this country.

[url]http://www.mayoclinic.com/health/celiac-disease/ds00319/dsection=symptoms[/url]

Celiac is also seen a lot in conjunction with Fibromyalgia, Peripheral Neuropathy, Addison’s, Candida, Chronic Fatigue, and Sjogrens.

[url]http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html[/url]

So, as I said, I may be grasping at straws, but am interested to find out if I have a problem with either of these two, and if that may be at least contributing to some of the neuropathy symptoms I am having.

Guess I sound kinda desperate… ๐Ÿ˜ฎ

wow

Anonymous
February 16, 2010 at 11:21 pm

[I]”previously posted by Dawn Kevies mom :

My mother often gets mad at me and calls me a woman of the 1800’s, but I really do think that men have a greater command of authority world wide. I am not sure that women should be in the first two positions. You have to admit though, she is cute! You betcha!!”[/I]

WOW… WE’LL NEED MORE THAN A GRAIN OF SALT ON THIS ONE

wow

Anonymous
February 3, 2010 at 9:37 pm

Ok I read this thread and I feel badly for everyone who has been posting and for Alice and Jim. everyone was so excited and supportive when Alice was going through her stem cell treatment. Yes even I missed her posts after her treatment was over. I wanted to know how she was doing. so yes it was a little sad when she stopped coming. But she has to take care of herself, so if that means working on getting better and focusing on herself then go for it.
I was glad that she was also able to go be with Jim and help him through his treatment.

Now for the “cure” word Maybe it was not the best word to use because so many look at that word to mean the CIDP will never come back. But I am glad that Alice is doing so well and feels like her CIDP is gone for good. so why are you all so mad that she chose that word “cure”? so what if she used the “cure” word. Its not like she said her doctor told her she was cured, I am sure he can’t use that word so soon. But she feels cured so let her be happy. I hope her CIDP never comes back.

I am sure Alice of all people knows that it could come back but my goodness we should all try to think positive. Speaking positive words brings about a positive outcome. I am also thinking that she was upset because she is being attacked over one word.

I know when I read her post on teh facebook CIDP site my first thoughts were gosh I hope new CIDPers don’t get the wrong idea and I thought gosh I don’t think I would say cured so soon. but you know its not for me to say she is wrong, who knows she could be cured. why are we so afraid of that word?

I think if my son got a treatment and all of his symptoms were gone in 2.5 months I would probably be screaming from the roof tops that the treatment he was getting and God had healed him or cured him. does it make me wrong, I don’t think so. Now if it were to come back then we would deal with it then. But we would relish in the fact that he was better, now

But for the sake of this site and not to hurt each other any further we all need to stop trying to be RIGHT. everyone’s CIDP affects them differently and all teh treatments used to treat this terrible disease affects each patient differently.

So I hope everyone gets better and I hope that stem cell transplant for CIDP gets approved by the FDA and Alice and JIm I am so happy that Life is Good. I will contine to check out your website to see how your doing. There is such promise in this treatment. there are several people at the facebook site who have already had the same treatment done or are going through it right now so I wish them the same success that you have had.

It will be great when you go back to work. I am just so grateful that you took the time to keep us updated on your progress because you didn’t have too. It let us all see that there was another treatment being tested for this CIDP and yes I beleive that it is going to be the closes thing to a cure. But you know I guess I shouldn’t say that because there are some people not all people, who get IVIG, plasma pheresis, and other treatments who respond to those treatments in such a way that its like they aren’t even sick as long as they are getting the treatment on a regular basis. so there are people out there who have mild CIDP, moderate and severe. we just need to be considerate to others feelings and not always be so serious and think its our duty to set someone straight just because they say something that you don’t agree with. also remember typing has no emotions you can’t see or feel someones emotion through typing.

well I hope people don’t get mad that I defended Alice because I like the support we get from this forum because everyone here knows what its like to have CIDP but we need to keep in mind that just because we dont always share the same views or agree don’t make the one we disagree with wrong.

Best of luck to everyone and yes there are lots of treatments out there and we all just need to find the one that works the best for you.

Wow!

Anonymous
February 3, 2010 at 2:36 pm

Deleted by author

wow

Anonymous
February 3, 2010 at 12:38 pm

It is too bad we can’t sit around the table and look at the facts,
and help each other out… I think as a group we could solve a lot
of what ails us..
Linda Martin.. I think your comments really enhance the discussion of
what recovery and cure means.. Really you are coming from my perspective, but don’t realize it….

You hit the nail on the head.. “I want to be cured” We all want that!
How do we get there, and what does it mean to you..

We are not gloom and doomers… I think we are looking for the answers..

Dean

Wow!!

Anonymous
November 11, 2009 at 10:12 pm

Wow!! I have not been on the forum in a few weeks and as I was looking over some other things I noticed this post with so many responses!!
I am sorry that you are experiencing these things but I know you know how great it is to hear everyone’s story and experience and know we are not the only one!!
I can relate to what so many of you have shared. My neuro told me I was recovered (because I had reflexes return) 4 months after onset and to go back to all my normal, previous GBS activities, work, etc. When I described in detail all my continuing symptoms, she said it sounded like I was suffering from sleep deprivation!! And I was sleeping at least 14 hours a day and not doing much of anything else!!! I thought she was crazy. Isn’t it obvious to them that some of these things have to be related??? I didn’t even go to my doctor for months after that because they told me I was recovered. I was so hard on myself and pushed myself so much that I’m sure it took a toll on me. I so wish at that time I had understood the reality of GBS recovery.
This forum is the place I always go to when I have a problem and feel like absolutely no one understands! You guys always help, you’re awesome!!!

wow

Anonymous
October 20, 2009 at 4:39 pm

Mumgo 181 really knows their stuff. I agree about the CNS vs peripheral. It sounds like MS should be considered. I know that ivig is sometimes used for MS so maybe that is why it helped you. I am sad to see that even at your best that you were not doing a little better. I am curious about the comments from the other doctors that you were not in a wheelchair sooner. Many people with cidp function normally for years. As a matter of fact, there was a man who posted a few weeks ago that said he did run some type of marathon!

wow

Anonymous
September 24, 2009 at 7:44 am

thanks everyone for your heartfelt responses… i believe so strongly in the energy and power of thought– and i feel so much of it coming my way from you all. thank you.

wow

Anonymous
April 21, 2009 at 11:29 am

I just read your post and I could just cry my eyes out for you. My little girl has only been able to walk on and off for 4 1/2 months and I am scared, too. I just pray like crazy and crazy. God promises that he will keep us under his wing. Read Psalm 91 and let it just comfort you. Tell him you trust him and that you are depending on HIM to take care of you better than any old doctor!

wow

Anonymous
March 2, 2009 at 4:06 pm

Great news, Andrew. I wished my titer would drop that significantly. I guess you’ll know when your symptoms worsen that you’ll need another round. There probably is not enough experience with Rituxan/antiMAG to establish a maintenance guideline if that is possible at all given that each case is different.

Wow!

Anonymous
January 15, 2009 at 1:47 pm

Julie,
NIIIIICE,

Quite the Comm. Centre. The only thing I see missing there is a
Pillow and an Afghan. Whats up with that??-tim–

Wow!!

Anonymous
January 7, 2009 at 8:14 pm

Hi Rocker,

That was a very profound, heartfelt and well-written post. It blew me away as I can absolutely relate to thinking pre-GBS to post-GBS and the huge difference.

You may want to consider a career in writing. You can work from home and make plenty $$$. ๐Ÿ˜€

Take care and best wishes!!

Tina

Wow!

Anonymous
November 26, 2008 at 6:29 am

Wow! That is a very interesting article! Thanks for sharing this. And we as women that cook in our kitchen may be clean but those little bacteria’s are something we can’t even see.
I always cook my meats until they are tender. Even Pork gets over cooked where it almost falls apart. I will not even eat a medium rare steak. It has to be well done.
Thanks for sharing this.
Hugs! Happy Thanksgiving!

Wow!

Anonymous
November 12, 2008 at 4:43 am

I watch that show alot but I missed it! Drats! But I hope it will re-run again and I get to see it! That is a pretty good show. I really enjoy seeing that show. It helps me to know that I am not the only one that has had problems in getting a diagnoses. Although I am now diagnosed but boy was that hectic. But I know now that I am not the only one in the world that has problems and when I see someone finally getting diagnosed it makes me happy for them. Not fun being sick and then not getting any answers. Looking forward to hopefully seeing this show! Hugs
lindah

Wow

Anonymous
October 17, 2008 at 2:42 am

WOW there are so many things that can be done to destress. I have found that my Dog is my best way to destress. He is a chihuahua ok ok I know that they are supposed to be mean and yippers right? Not my little man he is so funny and cute and a social butterfly. he likes to be around everyone and loves attention from everyone. I could not ask for a better way to spend my time he will give you a hug and a kiss when you need it most. and wants to play and hang out even though I cant go to far or too fast.

My family say that we have some form of ESP between me and the dog because I can just look at him sometimes and He does what I want him to without any verbal commands. LOL that is my way of enjoying my time alone and the times that I cant stand things anymore there he is.

Wow!

Anonymous
October 16, 2008 at 6:35 pm

Wow Ken! Totally awesome! Your the greatest! What a beautiful site! Keep them coming! Loved that one!

Wow

Anonymous
September 22, 2008 at 8:11 pm

WooHoo! I was last last week and first this week ๐Ÿ˜ฎ

Wow!

Anonymous
August 13, 2008 at 2:08 pm

I wished I could get photo’s on my cats this way. You are so talented Ken! Very talented. You surely have a good camera eye! I went through the entire photo’s yesterday and loved the art work in here. Very talented indeed!

Wow

Anonymous
August 2, 2008 at 10:27 pm

Fred,
Are you OK? I think, maybe, I’ve just not accepted I’m “damaged goodfs” and exp0ect too much?

I’m a “doer” and can’t “do”. When I feel OK I overdo and set myself back?n I’m starting to thingI might just lie in bed a week and see if I regenerate? But, lastr time I just “lauid there” was 6 months of traction!

Anyway, God BeWith You in your Journey, I’ve just started mine, and, I guess, I’;m expecting to “fix” this, like you would an aitomobile or water heater or leaky roof! (Former Mechanic/Engineer) And thus just doesn’t “fix”! As I watch myself age and crumble rapidly, though, I can’t help but think tome is of the essence? Yet I’m told to “just sit and wait! Grr!

Hope it works out, how does that combination feel? IvIg made me fel LOUSY! and didn;t help the symptoms. Actually the numbness w 60- mg of prendosone is fairly good in my legs and arms,it is my face that has gone numb recently and the weaknes and fastigue are signficant and worse astime goes, As I said I keep trying to DO stuff, I think ‘m killing any healing- but I’m a single parent homeowneer, etc. I dunno, but, hey, best of luck!

Eric

Wow

Anonymous
August 1, 2008 at 6:51 pm

Wow Scott! You had a bad experience with that spider bite. I know that was very scary. Can’t believe the hospital’s did you that way, but then again, I can because of my experiences with them myself.
I have learned when it comes to something rare they have a time handling it. If it’s something simple then they can handle that. But anything rare requires a center that deals with rare. I have learned the hard way. I never heard of CIDP until the other day when my neurologist told me I had it! And now am learning quite a bit!

Wow!

Anonymous
June 19, 2008 at 12:55 am

Again, you folks are always an awesome help!!!

I decided to continue on the nursing education track, as i believe there are so many routes one can take in that area alone. I had no idea of all of the positions that you guys have talked about! You folks in the medical field have some amazing jobs!! It makes me proud to be a nurse when i hear you talk about your work. I really believe the lord lead me to nursing for a reason, and i think this is part of it. Also, like one of you said, it is something that i am good at. And i think im a good teacher at work, so why not roll with it! What other career is so flexible? And, like one of you said, how ironic that my career caring for the sick now has to help the “ill” care for the sick.

About teaching-
I remember one of my nursing instructors having a heart attack in the middle of the semester. He came back doing pretty well, but not totally up to par. so, instead of him lecturing a lot, he had us do presentations, teaching one another, and he would sit aside and add in what he felt necessary. It was nice for all of us.

Well, time for bed (or vegging out in front of the tv, in my big, comfy bed, with my big, clumsy black lab) Oh, he flopped his big butt right onto my belly (yeah, the giant baby bump one!) a few nights ago:eek: He fell over like a tree! Wham! ANd then then bratt tried to stay there, like having his head on my boulder of a belly was actually comfortable! I love the boy, though, and he’s my bed buddy now … until hubby gets home at 4 a.m.:p

Love and Peace to you all!
Jamie

Wow!

Anonymous
June 4, 2008 at 10:29 pm

Adina,

I, too, am a nurse, so i know exactly how hard nursing school is. I also lost very close loved ones during that time, but i cannot imagine losing my mother during such an already-difficult time. I can’t give you enough credit for pushing through those last few months! It must have felt impossible! I don’t know your beliefs, but it sounds like you know your mom is there with you every minute of every day. Remember that, especially on those days when being a nurse feels like you are ripping your heart out of your chest to share it with a patient and their family. You will come across those times, but keep in mind that the moments in our lives that hurt the most, are also the ones that heal our internal wounds. If you ever need another nurse to vent to, or as a patient, another person to talk to, just hollar! Congrats! Know you make your mommy proud!

wow

Anonymous
May 15, 2008 at 4:12 am

hi there, your right it is fantastic to hear stories like yours. I just wanted to check, i may have missed it in your note, but are you on NO medication for CIDP? If this is right, how long is it since you were on medication, and did you just wean off the steriods and that was that!!!!! or were you coming off steriods and ivig together?
cheers and am glad to hear you are doing sooo well.

Wow

Anonymous
May 14, 2008 at 12:36 pm

How helpful these comments have been. I also noticed my husband seems to forget but did not know why. As usual I am going to copy a couple of these for him so he does not think he is just losing it. I do not have cidp but I still have to write sitcky notes because I am trying to do so much and need to keep things straight.
After 4 weeks on ivig we both noticed that he started falling again and became weaker. Could feel his legs move in bed which meant he also could not stay still long enough to sleep. He also was told by a eye doctor that he thought his balance was from vertigo. But his neurologist said it was from a artery when he lifts his head it cuts off cirulation and makes him dizzy. Had two more weeks to go before another ivig. – this is the day and he insisted he could go by himself.
So now he needs to get an mri but doctor said check with family doctor first to see if he already had one. Well it has been 2 weeks and he is just now calling the neuro to ask for a prescription to get an mri as he did not have one before(must have had one from a previous neuro he does not now see) Any way he seems to put off things alot l This is just one out of many things I keep haveing to push him to do. I thought he just did not care or depressed.

I think depression has alot to do with it as I feel overwelmed sometimes myself.I thought if he had something to do it would help him to keep his brain active. Any comments.

wow

Anonymous
February 19, 2008 at 2:23 pm

I always have watched Mystery diagnosis and after my gbs I wondered if they ever would do an episode. I was sitting in my room with my sister and was unknowingly watching your episode. At the same time I was telling my sister how I would love to see it. I was listening to your symptoms and I was thinking that sounds like gbs. When the diagnosis was gbs I was shocked. Wow please respond. i have yet to tell my story, but I soon will. Take care all.

Wow…

Anonymous
December 15, 2007 at 10:20 pm

It has been a long time since I posted here. I had GBS 24 years ago and as I have been reading here I seem to hear my own story repeated over and over. I was completely paralyyzed and on life support. I spent 4 months or more in hospital and had several rounds of plasmapheresis. (My plasma was a blackish green…anyone else out there with similar story? There may be a connection to food poisoning rather that gastro or upper respiratory infection) I went home with some issues but nothing that stopped me from working full time, raising a family of 4 and enjoying life.

About 2 years ago I began having unusual tingling sensations on my face and arms, the tingling in my toes began to increase to the point where today is extends to my knees. I have muscle cramping, tingling in my hands and arms, hyper sensitive around my mouth, nerve pain radiating down my right leg, increased weakness especially after a lot of activity or when I am tired, (actually all my symptoms seem to increase when I am tired), night time incontinence, a vibrating feeling that is really noticiable when I am still, and the list goes on.

My dr. recently sent me to the MS clinic thinking that I may be affected by this but it isn’t that. The EMG and NC tests show a neuropathy, but I was never followed up after going home so there is no baseline to determine where I was 24 years ago. I am still being tested but after viewing what you are all exxperiencing I am more convinced than ever that we are having residuals. I had also been doing some reading over the years and was familiar with some of the studies that are out there. There seems to be a trend that says the nerves never completely recover and the small nerve axions take over some of the work of the larger nerves. As we age these axions are giving out.

I am on Gabapentin for the neuro pain. Not sure yet if it is working. Time will tell. Merry Christmas everyone.

Janet:)

Wow

Anonymous
April 25, 2007 at 6:47 pm

That is so awesome to hear!
It just goes to show that sometimes it takes longer for some but they can get there eventually.
Give mom a hug from Me and Nate.
Trudy, Natesmom

Wow

Anonymous
April 14, 2007 at 11:42 pm

Lee, I am so glad you told me this. I never knew anything about reflexes and how they worked. This helps me somewhat to understand what is happening to him.
Tuesday when we go to PT, I am going to print your post and show it to Nate’s therapist, and talk to her about what you said and see if she knows what you mean. I bet she will know exactly what is happening.
When Nate’s knees buckle, he tries to catch them and only injures himself in the process. I will ask her to see if she can teach him what to do instead of doing that.
It has to be so weird to have your legs do what his and a lot of people on this board do. I can only imagine.
Trudy, natesmom

wow!

Anonymous
March 5, 2007 at 2:19 pm

hey that’s awesome! i’m so proud of you! keep up the good work. i hope you feel stronger every day.
love ya,
deb

wow!

Anonymous
February 9, 2007 at 11:15 pm

i just read the article and watched the video. it’s amazing how we all feel like we really want to die when we don’t know what’s wrong and we’d rather be dead than live like that. i remember feeling exactly as he did when it happened to me. but alot of p.t. – o.t., determination and support from family and friends got me through it. i am left with many residuals, but i now know life is worth living and even though i’m not the person (physically) that i was 5 1/2 years ago, i’ve learned to see life in a whole new way and not take things for granted as most of us did prior to gbs. thank you for sharing that webiste with us.
deb

wow

Anonymous
January 8, 2007 at 7:42 pm

Your awesome VMAC. I agree completely.:cool:

Wow!!

Anonymous
January 2, 2007 at 1:43 pm

Can you believe that [COLOR=”DarkOrange”][B]Boise[/B][/COLOR] [COLOR=”darkorange”][COLOR=”Blue”][B]State[/B][/COLOR][/COLOR] – [COLOR=”Red”][B]Oklahoma[/B][/COLOR] game?

Wow

Anonymous
December 17, 2006 at 5:34 pm

Breathing is one of the most common problems I have seen and read about. You were very fortunate not to have any problems with that.
Nate could barely get any air into the top of his lungs, none in the bottom at all.
His breathing was down to .97 and thats low.
The doc was just about to intubate him but he talked to Nate and told him if they did it would be very hard to wean him off, and to just keep trying as hard as he could to breathe.
Nate did his best and got it back up to 1.5. His doc said that would be enough as long as he kept it there and didn’t go any lower again.
It took him 3 mos before his lungs were filling up well enough to not be puffing the way he did. He still has problems with the lower lobes filling all the way though.
He lost bowel function also as well as bladder control for awhile there.
He still has problems telling if his bladder is full but bowel control is ok, but he needs immodium a lot.
The varitety of things gbs affects is amazing to me. I find out more and more all the time, even after 11 mos.

WoW!

Anonymous
November 20, 2006 at 3:27 pm

My friend has GBS and used to be really active as well. I just read her your post and she just sparked up! Thank you for sharing your determination and courage- that is something that is contagious in the best of ways!! Congrats – you are amazing!

wow

Anonymous
November 18, 2006 at 8:05 pm

๐Ÿ˜ฎ i have every systoms you do butloose the around the waist feeling. this sounds really weird but i feel such comfort in hearing someone is actually sick like i am. sometimes i just think is this all a bad dream someone is going to wake me from. i wish you the best and hope you keep recovering. this is my 3rd year with this devil of a syndrom.i hope to be able to chat with you more. god bless …kelly

wow………………..

Anonymous
September 11, 2006 at 11:33 pm

[SIZE=”3″][COLOR=”Purple”][ATTACH]$2.17 today![/ATTACH][/COLOR][/SIZE]

Wow

Anonymous
August 28, 2006 at 9:12 am

I can’t believe it I AM WINNING ๐Ÿ˜€ Thank you, thank you!

P.S. How do I get my .gif to show up?