Ryan,
It is so great to hear from you & that you care enough to keep in touch. I remember your darkest days, when I used to talk to your mom on the phone; suggesting to her that you needed to try cytoxan infusions. You should talk to Emily (a young woman who used to be on the forums,) as your stories are very similar, only she was much sicker than you, being hopitalized for many months until she received cytoxan. The last I heard from her she was doing wonderful, even mountain climbing! She lives in St. Louis, MO & the last phone number I received from her is 314-550-3112.

I do believe that the younger one is, the better chance one has of making a full, or at least a much better recovery. My roomate at Mayo was 60 & I was 48 back in 2002. Our stories were identical, yet at that time she was in better shape than I was. She never got out of the wheelchair, she still needs aids to come in & care for her, also has a wonderful husband who cares for her. But she never had the cytoxan protocol, so I wonder was it that treatment that gave me my life back, or the age difference?

I was told by my neuro Dr. Gareth Parry that if the cytoxan worked I would not relapse, & my treatments were in 2003. So far I have not lost anything I gained back, although I didn’t get quite to where you are today. I still wear AFOs, have some weakness in my knees, & my fatigue is still bad. But I lead a pretty good life. It is always wonderful to hear how wonderful you are doing, keep up with your college studies & keep in touch with us via the forum. BTW I was reading on the Facebook CIDP forum yesterday, & they mentioned that the next symposium might be in Las Vegas? You might want to check out that forum, as there seem to be a lot of young people on there.

Blessings, Pam

I have bright red spots that can be any place on my body just over night it seems. I have had this happen about every 5 years for the past 20 years. It takes about 2 months to get these to disappeare. I break out in a sweat at anytime summer or winter. I keep the house super cool the year round…at 58 degrees. It makes it cheaper to heat the house in the winter, but it catches up to me in the summer tho while useing the AC.:) One person commented that it was so cold in my house that you could hang meat in there. The sweats are embarrassing, but what can we do ? I can take a shower and by the time I get dry and put some clothes on sweat is streaming down my face. It takes a hour or longer of just laying still in the bed to get the sweats to stop. What alot of good it was to take a shower..right ? It all has to do with the messed up immunine system. I take cymbalta and lyrica and 80mg of oxycontine 3 times a day plus two kinds of muscle relaxers. Hang in there; it will all be over one of these days.
God bless, Drummer

Chrissy, or anyone who may know, how does S.S. figure the amount of money a person gets on their disability Social Security check ?

God bless,
Drummer

I have opened the capsules up before and just dumped about half of the contents out and then put the capsule back together and take it. I did wonder when I would do this…is all the little beads in there the same thing or what ? I did not make the drug, so how would I know if there might be different drugs that work together in them little beads. I would wonder if …could something be harmful by MAYBE dumping something out that must be in the capsule to make it safe. I have usually done this when I have taken the limit of the prescribed capsule and need more, so I just used the old pull the capsule apart trick and took whatever capsule I may need that method apart for and take it. Just some of my thoughts when I did this and wanted to share .
I must also say that I don’t trust Drs. as far as I can throw them.

Okay so I’m jealous, we have had snow for 3 days. The temp over here in Canada will be -16c and it will feel like -20 with the windchill overnight. I’ve been in the house for the day because there is to much snow and the roads are terrible. 🙁

hye there

here is newbie and i really like to tell u that i m really very thankfull to all

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Jeff that sounds wonderful !!! Wouldn’t that be something if there was a vaccine that would cure us from GBS, CIDP caused by a vaccine ! A vaccine to counteract a vaccine.
The SCT in Chicago sounds good now for us already affected, if we could only afford it ! Its a shame that we can’t have universal health care. Yeah, we will keep praying for a miracle.

God bless,
Drummer

Can those with GBS be helped by the SCT, or is it just for those with CIDP ? I think most are willing to try anything for any improvment. I hope all will find help with these diseases.

God bless,
Drummer

I am on Lyrica and Cymbalta, and was wondering if this, Savella, could possibley help my pain ? Thanks to the ones who answer and I am praying we all have better days ahead .

Drummer

They will get you before you turn 55 and then you will get all the paperwork about 3 years later, but usually do not get called in to see their
Dr. They say the Dr. is not a SS Dr. They say You don’t have to pay the bill. I ask who pays the bill they say SS will…well, don’t that make them a SS Dr.? I think so. They will try their darnest to cut you off is what it is all about, and you had better believe it. Drummer

You need to tell a doctor what you have told us on this forum. You need to make an appointment for your self as well, and tell Dr. just how you feel. Hubby can use some of his frustrations of seeing others come and go and here he stays in bed 23/7. He can never give up hope and he must get it in his mind that he will not always be in bed 23/7. Getting out of bed was the biggest motivator for me, and I never gave up, and too this day I have not given up. He has plenty of reasons to fight for now and it is the 2 little girls and a loving hard working wife. Wife, please take a day off and go see a DR. for yourself…it will be a big help you you and your Hubby.

Love and Prayers,
Drummer

What part, if any, did Tony Eury SR. have on E getting a good 2nd place finish ? I had more confidence on E doing better with the old man sitting up there as the crew cheif. It was just like old times when E was winning alot. We all know that Eury JR. and E had some problems working together. I hope Eury SR. stays the crew chief all year, but I don’t think that is gonna happen. I guess we will all see soon.
Good night everyone. It is almost 4 AM and time for a ole man to be in bed. 🙂

God bless,
Drummer

You have to be really carful with sensory deficits, because, for me, it is really easy to get scalded in the shower. I can’t really tell how hot the water is until I put it on my face. That just burns me up. 🙂 Just be carful, ok. It has been alot longer with GBS for me, and it seems to get worse for me as more times lapses.

God bless,
Drummer

Jethro, I should have said “IGNORANT”, instead of dumb. lol 🙂
Jethro, I respect you for your strength and determination to beat all you have been put thru with these type diseases.

God bless,
Drummer

So glad to get an update from you. I think you look fantastic, congrats on not just losing weight, but on keeping it off. I remember so well all of the gifs you posted, LOL! It seems like the forum has really slowed down since those days; without you, Brandy & Jerimy there isn’t much action anymore. Alice has managed to pick things up on the CIDP forum, however.
Pam

He should have been admitted back to a GOOD hospital. You should have been asking questions before they sent him home. This is nothing to mess with for 1 day, let alone a week or three. I have not read all the replys here, so I hope you already have him someplace else for help. God bless you both.

Drummer

i 2nd what codystanely (liz) and dawn said.
it is possible to be in remission and the best way to know is to be off meds that “hold it at bay.”
i hope you are 😉
i tried twice over the past year to ween off prednisone– only to begin to relapse. i felt it important to know for sure that cidp was still alive and well in me before eradicating my immune system with chemo… (you may or may not know that i am heading to northwestern for a stem cell transplant, beginning sep. 8th.
wishing you the best,
a.

There is no way I would let my daughters take one of these vaccinations, even if I had to leave this USA to get away from it. I would think most all on these forums would not submit to this vaccination. I will continue to pray nothing goes wrong with the ones that do take it.
Please God protect our little girls now and forever from such things as these that may bring them nothing but trouble and maybe death.

Drummer

Stormy, we wiil be praying for you on the 12th !!! You take all the precautions you can while you are out and about. Linda, I think it is not a bad idea to stock up on a survival kit if you will. I heard on CNN tonight and Wolf Blitzer said it is a possibility that this flu may get worse for us when the temps warm up here. That all we need…not only have to worry about dodgeing the flu in cold weather, but now maybe the year around now, or for this year anyway. Lets pray we don’t have to do that !!! I have never heard the word GBS mentioned and they talk about the 1978 flu vaccine and say they pulled it off the market after several people getting sick with it and some dieing. I wonder why they don’t mention the GBS and give us a little bit of exposer anyway ? Our liasion is having a walk a mile for GBS the 9th of this month and that will be something to get peoples attention anyway. They have walks and runs for cancer, heart and everything else…so why not have something for the GBS group.Thanks Susan for getting this started for us here.Susan, I hope you are able to be there the 9th. I know you will if anyway possible, but I also know you have alot of problems like the rest of us and probably more than some here. Well, gotta get off here as it is getting late now.
God bless all,
Drummer
PS – LindaH, women will use anything for an excuse to go shopping ! lol 🙂 Just teaseing y’all Linda. lol 🙂

Stacey, please let us know what is going on there with the flu. You are in a good position, unfortunately, to get the first hand news. I see on the news now they are not calling it swine flu, but something else that means the same thing. Seems some folks have quite eating pork and that is costing some pig farmers big time. I don’t blame them tho, and I would probably feel the same way if I was a pig farmer. They are saying for us to get ready for a world wide pandemic. Yeah, just like the one in 1918 I am told. I think that one killed millions, and surely we are Much more advanced medically than we were then. Yeah, I will be washing my hands and rinceing with alcohol. I always do anyway in the winter and flu season.
God bless all,

It is almost impossable to stay away from the flu of any kind. My wife brought some strawberries home about two weeks ago and got some more last night to make a pie with them. Well, there is no strawberries ripe here locally for another month now at least in the midwest states. I asked, where did the berries come from ? She said Southern CA. Well, you and I both know who picked these berries, and they are a hard thing to try and wash before you eat them. It is not just the berries, but lots of other fruits and veggies we eat this time of year. Just do the best we can and let the chips fall where they may.
God bless all,
Drummer

Hey there Jeff, I will take the cure for the pain anyday and let others suffer if they so choose, I know some on here haven’t , with the disease. Has anyone ever thought of commiting suicide to ease the pain ? I have thought of letting a train cut my legs off;you could say that was suicide, to stop the pain. Yes, there is a mainline railroad that runs close to my house and the thought came to me as I heard the trains going by the house here. That was before I found a real pain management clinic with some of the best DRs. with several GBS patients.
God bless,
Drummer

Hello Karen,

I can help you with some Dr info. Please give me a call Mon. 330-724-2608

Sorry your father is having so many problems. Have you contacted the liaison in your area? We have a info packet that can answer many of your ?s. It is free of charge. Contact the foundation by email or phone. Also we have ‘communication cards’ that are $20.00. If you can not afford these, try writting common ?s such as ‘pain’, hot, itching, ect on a poster board. When you point to common sayings, he can blink his eye’s yes or no.

I think age has a big part to play in our recovery too. Some young whipper snappers can climb several mountains before an old codger like me can get started. Just do all you can everyday, and enjoy the moment; while you are still young and can do so. Well Glory ! Take a vacation ! 🙂 Be thankful, and I know you are, we made it thru another winter and springtime is here !
God bless,
Drummer

I have residuals and they are worse now than they have ever been. It has been longer for me,GBS, than most on here. The Dr. said it seems like something new all the time with you. Duh…YEAH !!! There is nothing they can do but run a bunch more tests on you to make you think they are doing something for you. Well, they are…wearing you out with all the running around taking their tests !!! For me, I might as well keep my mouth shut, for all the good it does to mention residuals to any of them.
Will keep you in my prayers.

Good to meet you Helga ! I know what you mean about taking all that medicine ! I do hope and pray you find something that works for you. Please let us know what and how it does for you. The fatigue is a big, big problem for me also !!! Hope to talk at you later. 🙂

God bless,
Drummer

the presentation of your symptoms were/are quite similar to mine. after trying other things, i have settled pretty comfortably with cymbalta 60 mg and vicodin conservatively. my experience is that if you take just enough vicodin for your pain level, you will not feel a significant cognitive difference…

hope this helps.

neurontin did nothing for me except made me really tired and kind of dumb, slow.

alice

hi donna, my name is alice and i got sick in december 07, one month later than you. in my case i was diagnosed pretty early on with cidp — based on your post it might sound like you had a bout of gbs, not sure…
if you’d like to be in touch privately feel free to contact me. perhaps we can be of support to one another — i’ve been doing much better on a prednisone treatment.
to know my kind of beginning to end story, feel free to read my posts.
there may be some parallels between our conditions and support we can provide each other as i too was on a rollaider and worse, until i began my latest treatment of prednisone.
my membership allows contact by private messaging or by email so do feel free to contact me in either capacity.
hope you are doing well, having a good day,
alice

Sorry to hear that Tom is having so much trouble. I was dx with CIDP in NOV 2007 and it totally has turned my life upside down. I went from independent to totaly dependent on my husband 24/7. I use a walker and still can not drive.
This forum and belief in God is what has continued to give me the strenght to keep trying.
Keep us posted on how you are doing.

I have noticed people over the years and when they get about 55 or 60 they start having trouble with their eyes watering really bad and they will have their hankies out wiping their eyes really alot while just siting and talking to you. I would have to guess it is just age mostly and maybe a very small percentage is allergies of sorts. Just listening with my eyes while talking to people of the above mentioned age group. lol 🙂
Clear sailing to all.

Drummer Man

Janet and Jeff, I have to agree with both of your posts. I have alot of residuals in both hands from GBS. You do know the Drs. get paid big bucks for doing surgery…don’t you ???? I don’t believe everything a Dr. has too say.
Have a good day.

Drummer

Stoney, I have never tried this and did not know it existed. I will ask Dr. and my pharmacy about it. I use Capzasin HP and it helps alot with my muscle pain. It is basically a creme that is made up of hot peppers; that I do know. I would recommend it for anyone with GBS pain. I too am on the Oxy and other pain killers that work well for me. Cymbalta and the Oxy work most of the time for me. I also use Motrin, 800mg, four times a day for the arthritic type pain. Let us know how this gel works for you. Have a good day,and nights Stoney.

God bless,
Drummer

Caryn,

I belive we’ve never met before, so i just wanted to say hi. My name is Jamie. I’m pretty new here and im loving it. Everyone is so sweet, and full of all kinds of knowledge. I can’t tell you how much better i feel after stopping by this place!:p

Good Luck and Best Wishes;)
Jamie

Hi all….
In regards to Gene…he posted on 4-29 and it is now 5-23….he said he
had 2 weeks to live. For his sake, I hope he is home with the Lord and
not suffering.

It has been my experience that people post here and our families don’t
know of our friendships and whom we have touched in many different ways.

As Gene’s ‘GBS Family’ – let’s pray for Gene and his family that they will
all ‘be well’.

I have a feeling Gene hears the many words of love on this post. We keep him alive by living the gift of strength, wisdom and hope he gave to us
all.

May he be at peace!!!

Take care and be well. MaureenBoz

[FONT=”Comic Sans MS”][SIZE=”3″]Hel Lo Oh?
Anybody home?
Okay, I[I] promise[/I] 😮 I won’t embarrass y’all, I’ll stay off the table, C’mon back now, PLEEZE?:o
Really, and I made Pizza with extra cheese, enough for everybody, ‘Kay?
I’ll have a Spring Tonic,
(Vodka tonic with a shot of melon liqueur) please bartender
See ya
V[/SIZE][/FONT]

Hello,
Welcome to your new family where we feel what you feel. Try to get in touch with one of our members called JETHRO. He is from southern Indiana and would be an excellent person to turn to for help. He does not come to the forum too often, so probably won’t see your post. Just click on where it says “Members List”, that’s in the blue/grayish bar just above where it says “post reply”; and go to the J’s for Jethro.

If he is allowing it, an email is probably better then a PM. We are ALL family here, so if he doesn’t respond, follow up with a 2nd or 3rd email or PM. Some people just don’t read their emails often.

Wish I could give you a hand, but mine are just like yours. Gene, you are right about the 10 year mark, as this is about the time mine started bothering me. I never did post about it though. Jeff, I too am on the same two medicines you are and a bunch more to boot. I just take alot of antiinflamatory type drugs for them and try to keep them under the covers and warm, and that does help some doing that. Mine are hurting now as I am typeing this post here, but it is almost bed time for me and also medicine time…again. 🙁 God bless all my frineds on here and hang in there…cause we are gonna make it.
Good night all.
Drummer

Julie, you can sign up for SSI while you are waiting for your SS. There is a 6 month waiting period before you can get SS, so just go ahead and get your SSI while your are waiting for your first SS check. Actually my SSI with the dental and eyeglasses and other things was better for me than the SS, but after 6 month waiting period I had to drop SSI and start getting my SS. Then, after getting my first SS check, I then had to wait for two years before I could get on Medicare. That is their rules, so what can we do.
I hope this helps some to all who may be going through the same things you are Julie.
God bless,
Drummer

How are you doing? Been thinking about you and praying for you

welcome to the forum. I just signed up last week with a new diagnoses of CIDP in the last six weeks. They thought at first I had GBS and now changed the dx.
I am a large dose of Prednisone 80 mg a day and they say that is the best treatment for me along with CellCept.
My legs are weak from knees down to toes and arms from elbows to fingers. I feel electtic shocks all over most of the time. I’m using a walker part time and will start PT next week.
I have no idea which meds are best for you, but I do wish you luck and prayers over the course of your treatment.
the one thing everyone keeps telling me is {I have to develop patientce]. that no matter what when you are dealing with neurological issues it takes time.
I, of course, want an instant answer and cure. Have found this whole process to be fairly scary.
I have found this to be a very useful site and extremely helpful info.

Hi,
I have been answering the questions you sent me, so check for PRIVATE MESSAGES. Just look at the right side, above QUICK LINKS on the blue bar and click on PRIVATE MESSAGES to read.

My hands were severely damaged, I write slow, so answers come a few at a time.

Hi,
If someone with the other syndrome, CIDP, would be approved as your assignment, I’d be willing to let you email back and forth with me. CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is the chronic longer lasting stage of Guillain Barre and we do have hand problems that benefit from CIDP.

If you’d be allowed to try me, just click on CODYSTANLEY and send me an email or PM

I liked Cheryl’s advise to keep yourself calm and out of stress. I know that it is always helpful to have someone, like a spouse, and better yet a Dr to tell you it is not a relapse. I must stress, without stress, the importance of no stress. No pun intended. Well, not much anyway. I worded it like this, hopeing it will help you to remember how important it is for your recovery to pleeze don’t stress. It took me awhile to remember this and hope you are not like me and have to learn this the hard way.
God bless all on these forums.
Drummer

Teacher, you had a number things that could have started the immuine system to go wacky. It is so easy to catch something from the children while even doing your best to sanitize everything, but there is always something that seems to catch up with us. I try so hard to stay germ free, but I still get something every winter. No flu shot for me either. I suppose all we can do is to try our best and pray alot. Will keep you in my prayers for sure until some more time passes for you.
God bless,
Drummer

I don’t know what kind of pain some have that any ole over the counter med helps. Lisa and Jody, I agree with you completely. I will take narcotics, prescribed…I had better say that, and have some kind of life anyway. I would be dead if I did not get something to kill the pain for me. I think you can just take it so long and then something will happen…like get the med you need or kill yourself. Don’t get me wrong, I would gladly take a apsirin if it helped me with the pain, but no such luck with me. Lisa, the pain clinics use the methadone on people who are addicted to drugs and they need more and more of them. Lisa, there is nothing wrong with useing Methadone, and I am not there yet, but will use it when or if the time comes and the pain clinic thinks I need it. Ya’ll have a pain free night.
God bless,
Drummer

Teacher…,holding my hand up lol , May I ask you a question ? Did you have any kind of illness or food poision leading up to you GBS ? I am assuming it was too early for you to take the flu shot, so I am leaveing that out as a cause for your case. I was just wondering if it was something I mentioned above to give you your case , or what ?
You really be carful about going back to work too soon, or you could end up back in the hospital again; and it may be alot worse for you the next time.
Glad to know you and look forward to hearing from you again with better news.
God bless,
Drummer
Dave, start a thread and stateing the same question there, and you will get replys quicker; as some people do not read all the post, but do look at a lot of the threads and read the ones that interest them…well, that is the way I do it anyway. There have been plenty of threads with people with GBS and who have had surgery and most of them with no ill effects from the surgery on the GBS.If surgery is something that really needs to be done…well, what choice do you have ? Take care and get back with us here Dave and let us know what happens, and am hopeing the best for you.

Yes. He learned the hard way he needed to slow down a little. He decided if the therapist said so then Mother must have been right! We have certainly found that there are a lot of people that have this and are still struggling. Thank you for your support and I will keep you updated. Anything anyone could tell us that would help please let us know. Thanks:)

Sorry Gene you are having so much trouble. I always worry about things like this, and especially when a new medicine is added on, or just quiting one. I have been on Cymbalta for about 6 months and it helps alot for the pain. I take 90 mg now, and can go as high as 120 mg a day. I am taking zoloft and cymbalta together and it alarmed the pharmacist, and said that can really cause some strange in the body togother. He did not ellabrate on the subject and wife did not go into detais with him. I am having no problem with it yet, but could anytime and that is always in the back of my mind. Hope you can get straightened out Gene. Thanks for posting the warnings. That is what I come here for .

God bless,
Drummer

I remember several years ago, maybe 10 years, we were talking about Andy on here and he said he made a complete recovery. Well, it went on to say he was just paralized from the knees down, and oh yeah, he was in the hospital for only 3 days. In my opinion he didn’t have GBS long enough to even get a taste as what it is like to have a bad dose of GBS. They like to put these kind of people in front of us and show that well…Andy Griffith had it and he made a complete recovery. It made people think now that if they hear of someone with GBS they can remember Ole Andy and his COMPLETE recovery and expect others with GBS to do the same. If he can’t walk and has pain I would say that is not 100 % recovery now…would you ? The reason I am bringing this up now as I remember at that time it made alot of us mad for him saying that. 3 days in the hospital………………………..
Later folks,
Drummer

SS does not have money for the ones who have paid into it for years. They have money for the illegal aliens coming here tho, and having babies on U.S. soil. This country has leaders who have gone plum loco and we are feeling the effects of it everyday. Let your representives know how you feel and that you are gonna vote some other way. Yeah, that will get their attention the most.
Drummer

Boomerbabe, I am too lol, a big 10-4 on not being cured. I think it is just like polio, as I have seen people who were totally paralized and have been that way for 50 years, and know of others with it now who have some bad limp and the built up shoes and with the awful hip malfunctions that makes them look like they don’t have a waist and seem to work and don’t seem to have any pain. It is weird to figure as most of us here have severe pain; , like myself for example. My income tax preparer is the one who has been totally paralized, but still manages to use his poor hands which are bent and curved everyway. It is sad to look at and try to think what this person has had to deal with all his life. 🙁 Take care and God bless us still.

I would not take either. I have a really bad headache when I cough and called the Dr office to call me in something for it. The nurse said I will talk to the Dr and get back with you. Well, about 15 minutes passed and the nurse called back and said the Dr was gonna call a mist flu thing for me and hung up. I called right back and said I could not take the flu shot cause of GBS. She said it was a pill I had to take for 5 days and not the mist. I said is the flu going around now ? She said everything is going around now. Be carful GBS’ers and wash your hands alot. I will let you know tonight or tomorrow to tell you for sure what he has called in for me to take. I am scared to death to get the flu. I told the nurse I could not go thru that again, and don’t know if I wanted to again if I did get it. Stay safe folks.
God bless,
Drummer

Tracy, I doubt very seriously if you are 100% recovered. The Drs know there is nothing else they can do for you and say the 100% recovery to make them look great. In other words, they are just blowing smoke. Only you Tracy know how you feel and friends and even family think most of the time there is nothing wrong with us now. Welcome to the world of GBS. When the Drs hear G B S they don’t know a thing about it and as far as they are concerned GBS stands for…Gotta Blow Smoke, cause they don’t know nothing about it.
Tracy, what I am saying is, you gotta be the judge how you feal. You may have to get a new Dr.; like most of us on here have had to do.
Tracy, best of luck to you and prayers for you too.

Drummer

Even if you don’t use your correct name on the forum, they can still find out who posted it by finding e-mail address attached to the posts on this forum. No privacy is right. 🙁

Drummer

Kinny,
There are so many things that can be depressing; yes, even after taking meds for it. I look at it this way, God is pruning us for something good. It could even be something good for someone we help, or something to make us a better person. I know there are people who don’t believe in God, and that makes things much harder for them. Oh yeah, I have as much pain as most anyone on this forum, but it has made me a better person, and I have had a few people tell me I am a blessing to them. I know there are many others that I have helped and don’t even know about, but will someday when this life is over.
God bless,
Drummer Boy 🙂

Judy, I am like you and don’t like things like this at all !!! We have no privacy in this country anymore with all kinds of things and people spying on us. It is just like being in the hospital and I was trying to use the urnal and two Drs. and a nurse pulled the curtains back with no notice they were about too. I struggled to cover up real fast, but Dr seen me and said “there is no privacy in here’ and kept right on talking.
Judy, I suppose you and me, and any others like us, will just have to start e-mailing each other and stay off the web. 🙁 It truly is upsetting to me to say the least !

God bless,
Drummer

Julie, you’re a riot ! A real kick in the seat of the pants. LOL 🙂 Thanks for posting and, I am glad to meet me. 🙂

Drummer

Could some of her problems now be from her worrying about the GBS coming back again ? I just thought about this when I seen where she locked up really quick and her breathing being affected for 2-3 days. Just a thought as I know the nerves can play some nasty tricks on the body. I have you both in my prayers and hope you find a hospital you both like real soon now.

God bless,
Drummer

I have red spots that come up on my legs the last 3 years now. Dr. said the last time I was there that it looked kinda like eczema, Doc has not made his mind up yet what it is, but will probably end up seeing a skin Doc, the way it would get really red around the edge and almost nothing in the center of the spot. Some of them have eventually turned all the way red, and not just on the peremeter of the spot. They don’t itch tho and that is a good thing, but they just look bad. I also have purple spots on my feet when they are down and have lately noticed my legs from knees down have started to swell. Cannot even tell now that I have a shin bone because of the swelling. Folks it only seems to get worse with me as the years roll on. I have recently started having red and swollen arms from the elbows down. The list of problems just seems to be growing. Jeff, I too have lots of love and sympathy for others in the world who are sick and suffering with others problems besides GBS. I gotta get and take a ton of medicine so I can try to get to sleep.
Love and prayers to you all .

Drummer…Boy 🙂

Maybe you can have her Dr. to send her in thru the ER and to be admitted from there. I have know of people doing this. My prayers to you both.

Drummer

and welcome to our forum. It’s good to hear from someone doing so well and with a great attitude. We all need to take everyday one at a time. I’m not doing as well as you but not as bad as others, it sure effects all of us so differently. Guess we all need to be thankful for what we can do and keep plugging away.

Cap Dave , did you re-marry and move to SC. ? I remember talking to you a very long time ago and you were really having a bad time in the nurseing home and all. I don’t come here much anymore, because mainly I just don’t feel like it. I have severe weakness and also have a hard time controlling the pain. Good to hear from you anyway. Some good people on this site.
Later all,
Drummer

Hello Donuts,
Welcome to your new family in the USA. We do have members from the UK who will swim across the big pond to visit us. You can also join the UK forum at [url]www.gbs.org.uk[/url] Just look in the upper right gray bar and click on FORUMS and you can meet your UK family too.

So sorry to hear of your difficulty…been there, done that!!!

At the very least, she will be evaluated and perhaps a med change will
take place and she will be better., feel better and know it!

As we all know, nothing is easy…. take it one step at a time and
all will be well.

Hang in there….blessings Maureen Boz

Do you mean he does have the strength to walk if not for his dizzyness ? I would think he could not walk anyway, due to weakness more than him being dizzy. Sounds to me like he needs a good DR. and really fast. This GBS is not anything to dilly dally along with. How old is he now ? They say it is worse the older you are when you get GBS. Let us know if you get him some help, and what the new DR is doing for him. Is he also in a lot of pain ? Talk more later.
God bless

Hi Karen,

I am new here too. Sounds like a pretty tough go there at the beginning for you. I, like you, am hoping that having these great people here to talk to will help me feel less isolated and alone in this.

Ty

Abby, I appreciate your reamblings on as you called it. I can relate to things you have said and refused to say things like that and hardly even let the thought go thru my head. When I first started coming to this forum , about the time it was started years ago, I would not post, because it seemed to be that this forum did not want anyone to tell the truth about how they really felt, and about all the residuals that goes with GBS. This forum was to be for support and encouragement only and it did not want anyone talking about their residuals as I stated earlier. I know there must be some on here who remember the beginnings here and what they did and didn’t want posted. So, I took it that I was the only one with residuals that was very crippling and did not post much. Yeah, I have changed names about 2 times now as it be a long time between my posts and then I would lose my password, or the forum would just not let me log-in is the reason I look like a new poster. The truth is that this all the posts I have under this name and under this password. 🙂 To me, I think it is better to know what may lay ahead and therefore is not such a shocker when we don’t make a full recovery. Yeah, I can say that now; as I see others posting who are just like me and will probably never make a “full recovery”…full as in my terms. lol 🙂 Talk more….sometime when I have more energy. 🙁

Whats makes me mad is stuff like the GBS international literature says that most make a full recovery. Why do they say stuff like that ? Most I have met do not make a full recovery and can never return to work and have to turn to disabiity like I had too. I came to this site several years ago, different structure forum then, and did not post as I felt bad as being in the minority of the “FEW” who don’t make a full recovery. Well, since then I have found out that most don’t make a full recovery and return to their jobs. I can’t believe they are still saying that on the GBS literature that is sent out to people. I had a nuero. tell me a few years back that you don’t have pain with GBS and here I was setting in front of him and was in so much pain i could hardly stand it. I too went from making big bucks to a small disability check once a month. So much for building my 401 K up. 🙁 I get so mad at DRS that I could choke them.
Rocker, I was in the hospital in Columbus, OH. for 4 months and almost died. Why don’t everyone say the same thing and that is that the majority do not make a complete recovery and return to their regular job…Phooy !
Rocker, I live about 150 miles from you and am married and even if I wasn’t married I would not ever date a man. lol 🙂 Gotta have some humor left anyway. 🙂 Later all…….

[SIZE=2]Hello,
I’m sorry to hear about you daughter! I think that patients is the key word, it takes time to get better and even takes more time to get use to your new limitations. I became ill with GBS about a month after I graduated College and it seemed liked my whole world came apart. I was 24, tens years older then your daughter and I had a hard time accepting the fact that I needed a cane and I gave it up as soon as I could. At times I could probably still use one but I feel better being able to walk with out one, it makes me feel like my old self. I don’t think your daughter is giving up, I just think she is overwhelmed by her new limitations. Just be patient with her, give her some space and listen to her. I know for me I just wanted to keep going even though my body would not allow me and that sounds like what she is doing. Hope I make sense and wish you both the best!! 🙂
[/SIZE]

[SIZE=2]Hello,
I too get the [/SIZE][FONT=Times New Roman][SIZE=3]body jitters! I have notice that it is worse when I’m sick or tired and there are days when I could sleep all day and still be tired. I work full time and by the end of the day I’m worse, weak and shaking some days are worse then others. They too thought I had MS but so far no, just the results from having GBS. Take care of yourself!!! 🙂 [/SIZE]
[/FONT]

[SIZE=2]Hello Ali,
I know what feeling your speaking about however I had it during the time I had GBS and then it went away. I have not had it since GBS. Sorry I could not have been of more help, you have been so helpful for me!!!!!!!!!

Thanks Tammie 😮
[/SIZE]

From my own experience, finally thinks will get better and better as days pass on. Hang on there, keep praying and if you have not done it, try, believe with faith that you will be recovered and in a month from now, please write back and tell everybody your success story, we are waiting. But please believe, things will not get worst, you have already been thru them. What you read in the post is thru, but not necessarily you need to go thru them, you can be and will be one of the success stories. Love you and hope you the best.

God bless you.

Hi
I have the same issues even after 10 years. My doctor has me
taking 1000 mcg of B-12 and it seems to help with the cold. My
body temps seem a bit more regulated.
Good luck and think warm thoughts.
Blessings MaureenBoz

Hi Yankeebrad:

I think its really unfortunate and irresponsible that Mayo would throw such a horrible thing as ALS out to you before exhaustively ruling out every other possibility via a barrage of tests.

In many cases/variants of immune-mediated neuropathies, IVIG is not effective, or if it is, it is a very gradual improvement over time. Response to IVIG is not a way to diagnose CIDP.

I also have an asymetric form of CIDP, where weakness is much greater in one limb over the other. I have marked to severe muscle atrophy in areas. I do have sensory symptoms in addition to motor weakness. And, my CSF protein level has never recorded higher than 53. However, I do have oligoclonal bands in my CSF, and none in blood, which is a marker for MS – but, my NCV clearly shows demyelination and axonal damage, and conduction block, clearly indicative of the asymetric variant of CIDP. I’ve been seen by Neurologists at 2 top universities, and Mayo clinic in Arizona, and they’ve all come to same conclusion – asymetric multifocal CIDP.

These things are not that cut and dried…..people present symptoms differently, and respond to different treatments.

IVIG over the long haul is a stabilizing treatment for me, but provides no quick miracle turnarounds. IV Solumedrol was no good for me, and speeded up an exacerbation. I have found relief from plasma exchange as well.

I guess my message to you is to keep the doctor searching for answers – get the tests performed. If you don’t respond to IVIG, there’s steroids, immunosuppresents, chemotherapy, and even targeted proteins such as Rituxan.

I think the Mayo doctor was being lazy. Did they even perform an NCV (nerve conduction velocity?)

They don’t listen , because they don’t know what to do for you. They are also scared plum to death to give a person strong enough pain medicine to stop the pain. They need a dose of our pain for a few days to wake them up and listen.
Brandy, I just now seen the verse you wrote at the bottom of your post about your husband Frank. That is so sweet of you to say that about him. I respect you for saying that and am sorry for your lose.
Drummer
GBS 1986

You may want to go to the GBS for children forum and read some threads there may help. Just go to the control panel and scroll down until you come to GBS Child.
God bless the little ones. Prayers
Drummer
GBS 1986

Hello everyone!!! It’s nice to see so many familiar names again. I hope i can catch up with everyone again.

Greg

Hi Allaug,
Glad to see you made it across the big pond. Given more time, I think the forum will get even better. When improvements come, post some more about rituxan. We need to build up lost posts.

I’m baaAAAAAaaaack! 😀

lea, what’s broke on my website? i’ll try to get it fixed. i’ve been posting updates to it lately (finally).

good to be back y’all!

gimme an “R”
gimme an “I”
gimme a “T”
gimme a “U”
gimme an “X”
gimme an “A”
gimme an “N”

whatcagot? RITUXAN
louder = RITUXAN
YYYYEEEEAAAAAAA!!!!!

Y’all ain’t ready for me to be this much better! Cutting grass weekly, doing projects around the house (using power tools! :D), coaching baseball. Trying to get motivated to get rid of this extry 75 lbs.

Next Rituxan infusion 2 June 2006 and then off to Walt Disney World!

Later Y’all!

Hi everyone I am glad to be back I checked the site last night and it wasn’t working and where you can order stuff from their store the certificate for securities was for another site. So they might still have a few things to work out. Also on there main page if you click ABOUT GBS it leads you to the CIDP OVERVIEW instead of the GBS OVERVIEW but on any other page the link works fine.
PS: The time zone settings are all screwed up. I set it for Eastern Canada -5 hrs and the time is off by 2 hours I had to change to it to -3hrs from some other part of this world to get the correct time.

Sue