Bethany, welcome to the forums. I’m taking a quick break (at work) but wanted to just say: Stay optimistic and hang in there! I’ll respond a bit later.

Take care,

Tina

Hi Bethanny –

I know it is scary to be diagnosed with CIDP. My daughter was diagnosed when she was 4 years old.

I want to tell you that it does get better. It does! It can! And it will!

My 1st bit of advice to you is for you learn as much about CIDP as possible. Knowledge is power! It will be overwhelming at first but it’s something you have to do. Eventually, it won’t seem so scary.

Many people get upset because they just want to be normal. Well I’m telling you that your life can & will be normal…it’s just going to be a new normal.

As far as IVIG goes…it is usually the 1st treatment tried. My daughter has had AMAZING results from it. I know it sounds scary but it really isn’t. My daughter gets her IVIG at home with a nurse.

Do not let the cost deter you. There are programs available to help pay for IVIG. You can contact the Patient Advocate or social worker at your hospital & ask them to help you find information on what programs are available.

Your neurologist is right. Attitude is everything. Our motto is “CIDP does not have us – we have CIDP”.

Kelly

Bethany:
Welcome. You are certainly in the right place if you have CIDP. You won’t find a more knowledgeable, understanding, and supportive group of people anywhere. I know CIDP seems at first blush to be mysterious and threatening, but the mystery and fear can be taken out of it by research, support, and eventually familiarity. Many of us live normal or near-normal lives with CIDP. We are active, employed, and seemingly very healthy to those who don’t know. Unfortunately, some do struggle. Attitude plays a large role. Often, our friends and family simply do not understand what we are living with — and we at times hesitate to burden them with our complaints anyway. You will ALWAYS find the information and support you need here. Before you know it, you will be one of the “old hands” here, and then you will have the chance to welcome and reassure someone who is stunned and fearful about this mysterious and threatening newly-diagnosed disease known as CIDP.

This stuff can certainly frustrate you the beginning. As we speak I sit here hooked up to my IVIg . It’s easer as time goes on. You indicate your on steroids . See if you can start IVIg, it keeps me going with my normal routine. good luck as you process through this disease.

Hi, Bethany;

You will be fine–eventually. At the beginning it often takes some trial-and-error to see what treatments will work for you. But once you begin to improve you will be able to do most (maybe all) the things you did before. You’ll certainly be able to wrestle around with your kids. It won’t be long before you’re not so tired and you won’t be falling so much.

The first time, it took 6 months for me to find the right treatment, and after that I was back to work and back to the gym after 3 weeks of treatments. Not quite the same as before–it took about 6 months for me to get back where I was physically. I used to dream about being able to run across the street. But I was able to do that after a few months.

I’m glad you have your church family to help out.

-Marie

Hi Bethany,
Sorry you have to be here but welcome. This is a good place to be to learn about CIDP. I was just dxed Dec ’10 and am on IVIg every 3 weeks and also 15mg of prednisone every day. Ask all the questions you need to, group is good to share info. Also if you are a facebook person, check out “CIDP” there in the search bar.
Let your church family love and help you as you pray for God’s strength and care to surround you. God bless you!

A quick welcome! and a hug!

Carolyn,
Welcome, it’s good that you are improving. I came home in the wheel chair Christmas Eve and my legs also moved but I couldn’t stand or walk. I have PT twice a week since being home. I have gone from the wheel chair to the walker and now a cane.
Are you getting PT? Hoping those legs of yours come to life soon.
Bless You
Shirley

welcome to this forum. It is great that things are improving and we all hope that they continue to do so. Take your time and listen to your body. It is so easy to try to jump back into normal life–especially with two little children who may not understand so well that mommy cannot do as much as previously. Rest is really important. Expect that progress with come with baby steps and remember it has taken your little ones many tries before walking. The main problem with being an adult walking again is that it is so much further to the floor when you fall:eek: Lots of people here say that GBS stands for getting better slowly.
WithHope for cure of these diseases
GBS 3/07

Great to see you on here in person carolyn. I went back and reread all your dad’s posts – what a rollercoaster ride you had.
Glad to hear things are on the improve finally. Hopefully they will continue to get better day by day.
I got GBS 2 years ago when my kids were 8,4 and 3. It was so hard being away from them. I didnt see them for the first 3 weeks, I had never been away from them for so long. But kids cops amazingly well – i bet youre enjoying being with your babies gain.
Good luck with your continued recovery and make sure you keep us updated with your progress!

Carolyn,

Glad to meet you. Having GBS is no walk in the park, however I can’t imagine doing it with two boys, one and three years old. 😮 WOW.

Hang in there, and be safe.

Carolyn, great to hear form you. I followed your dad’s posts as you were ill. Glad you are starting to see improvement.:) I too had GBS with four little kids ages 1-9. I was in hospital 2 hours away from my family for 4 months. They were the longest months of my life! I missed my kids terribly and it was hard to get through that time, but we survived and here I am 25 years later…It will be the 25th anniversary of getting GBS in a couple days:eek: Seems like only yesterday in so many ways…

Carolyn it’s so nice to finally meet you. Glad to hear that you are home. Recovery can be a slow process, keep a positive attitude and celebrate your recovery milestones. Take care and hope to get to know you better here on the forums. We are here to help however we can.

Jerimy

Jayant,
Welcome,
Great that you have recovered so much. Yes, everyone is caring,thoughtful and willing to help with any question you might have.
Stay well
Shirley

Hi my name is Brenda and was diagnosed with gbs on Oct 12 2007 and was upgraded to CIDP on may 5 2008, I found this site looking for info on these syndromes, and its great to know I’m not alone

Welcome Jayant and Brenda. I hope we can give you the information you need. There are a lot of good people with much knowledge on the subject.

Jayant and Brenda:

Welcome to our family. I am glad you found us but I also wish you never had the need to find us.

You are part of a very exclusive club. Most people go their whole lives without ever hearing about GBS. I hope you stick around and enjoy the GBS/CIDP community.

Lee

[FONT=”Comic Sans MS”][SIZE=”3″][COLOR=”Blue”]Jayant and Brenda,
Welcome, if you have a question, someone may be able to help. I you need to vent [we all do sometimes], this is the place to come.

I never knew this was a very exclusive club. If I had know, I would have been afraid to sign up. I not usually considered “exclusive” material. Although there was that one time I did win the national lottery and got an all expense paid one year trip to Southeast Asia. 😀 The trip included food, lodging, clothing and things that go bang in the night. :rolleyes:[/COLOR][/SIZE][/FONT]

Welcome to our group! This is the place to come if ya want to learn and feel welcome.

Jayant,

CONGRATULATIONS!!!!!!

Shirley

[SIZE=”4″]Yea, Jayant![/SIZE] [SIZE=”4″]Congratulations 😀 [/SIZE]

Congrats and welcome to the forum. There are floks here from every walk and time removed from GBS. Let us know if and how we can help. You will find many caring people here.

Jayant

Welcome.

I am just wondering why you didn’t join earlier. GBS is such a mysterious thing; you may not know what is happening in your body from time to time and, of course, why?

I always find this forum informative and I get answers without asking any question because all the doubts/points are discussed among the members. We can pick up the answers of our unasked questions from there. You have to be just in touch with the site

Jayant> CONGRATULATIONS! I am glad to know that life has been good to you after GBS. I am being patient and still have some fatigue but for the most part all the healing is still in progress and I slowly am seeing changes. I am plannning on doing something when I grow up and glad you are a great example! Welcome!

Hi Heather,

Welcome to the forum. If you need info, there will always be someone to give you that. I can’t speak medically as I am not a dr/nurse, but my personal belief is that age may play a part. That being said, I also believe that your overall general health prior to the onset is going to be important to recovery. There are lots of 65 year olds out there who could pass for 50, so you need to take that into consideration as well. Was your MIL healthy, exercising, eating right? It sounds like she was a very energetic woman. I believe all these things will play a part in her recovery.

The other thing we will all tell you, is that GBS is different for all of us. There really are no right or wrong answers to these types of questions because this illness rears it’s ugly head in hundreds of directions.

Keep asking questions and I am sure someone will be able to help.

Hi, Heather. I’m new here, too, but after reading most of the posts in this forum, I can say that you are in great hands! This is the most helpful and understanding group of people I’ve found.

I hope you MIL make a swift recovery.

Brad

Hi Heather Welcome to The Family, Your MIL also. Actually gbs knows no boundaries, gender or age. It is an individual type syndrome, no 2 people are exactly alike in onset or recovery. She may recover totally or may have residuals for along time to come, no one knows for sure. We like to say gbs stands for getting better slowly. Why are they doing pe and ivig? its usually ivig first and if that doesn’t show any improvement than try pe as a last resort. I think I read your MIL had improved with ivig, is that right?

Hello Heather – and welcome. I am not qualified to say much except that I hope you registered with the foundation so they will send you a book with a lot of information. I wonder if she is not relapsing so much as just not recovering as much as her Drs think? This is a s-l-o-w recovery process. It will just not be hurried no matter what and set-backs are common. Especially if you “push it”. I guess ypu have been plowing through all the threads in this forum. There is a wealth of information here. Your gentle and continued support of your mil is her greatest medicine. Time – patience – and love are just what the Dr ordered. Be sure to reassure her to “rest when you need it”.

We have cidp, but were initially dx w/ gbs for about 6 months. I can’t help a whole lot with gbs, but I do know that too much exertion can cause pain and weakness. Be careful not to over do the therapy. When you say the tests they took again were ok, were you refering to another ncv/emg? Have they compared the old results to the new? Any further damage? It is kind of early at this point as she is newly dx, but be watchful, I think you mentioned 3 treatments and now there is some worsenning, you have to decipher if it is residuals or additional damage. If the two other treatments improved her and then she faltered, cidp should be a consideration. If she continus to weaken and they do additional treatment and there is improvement, it could be cidp. Time will tell, you have to be patient and watchful. It took us about 5 months till we knew for sure and at that point more ivig was given and immediate improvement was seen. Good luck to you and ask questions, everyone here is so kind, helpful and encouraging. I do not know what I would have done with out these wonderful people!
Dawn Kevies mom

Welcome Heather, Keep asking questions and doing research. Iit is helpful to keep a time table of symtoms and events, test results and treatments. Sounds like rehab came pretty fast. How long was she in ICU? How long until recurring or worsening of symtoms? My grandson has CIDP but was diagnosed as GBS in the beginning. Keep the faith! JoAnn

Hi Heather.
I was 66 when I got GBS from a flu shot. I was affected from my knees down and received IVIG for 5 days then therpy for almost 4 months. I went from a wheel chair to a walker and then a cane and walking in 4 months.
From what you have said it sounds like your motherinlaw is doing good in her recovery. It is going to be slow at times and then at times over night there will be changes.
If I was you I would stop looking for the negetive and rejoyce in the postive. I looked for a difference in myself every morning. and I always found a change and in almost all cases it was postive.She will get better. I a year later can do almost anything I did before GBS. Be postive with her and praise her for her efforts and tell others to be the same way around her. I never wanted visitors when I was in the hospital because in 90% of the time they come in looking like you will be dead in the next 5 mins. I retired from a hospital and saw what visitors can do to someone.
Laugh with her joke with her and if she has fear listen to her then work with her on her fears. I send my blessings to all of you and you are in my prayers. Turn it over rest and this time next yr you will be laughing and she will be the motherinlaw you,ll love. by the way last July I had a triple bi-pass and now feel great. and listen to her honor her wishes. Your friend (Steve)

Steve,
How wonderfully you said that. Sometimes I, well alot of the times, I forget about the personal side and to think about the positive things. I just go into explanation mode. I should try to remember to be positive and encouraging to new members! You are right, the little things really do mean something. Just today Kevin was showing me that he can now fully extend his legs and do toe touches. His hamstrings were so tight before he could not even run with full stride. Thanks for reminding me!!!
Dawn Kevies mom

Hi Dawn…just had to sneak in a woohoo for Kevin! Sounds like he is really making progress. Good for him. Take care.

Heather it’s nice to meet you and welcome to the family. We are here to help however we can.

Jerimy

Hello and welcome. I am glad you are finally getting treatment for you CIDP and that you are doing better. Take care
MJ

Welcome to the community. You have had many problems for such a young person. I am glad to see that you got a good Neuro. Listen to him/her, and forget all those other doctors. Don’t ask them for advice they are not qualified to give. The I V I G is good and will help you.
Mary Ann

Welcome and thank you for sharing your story.

It is so important for all of us to trust our gut feeling.
We know when something just doesn’t feel right!
Listen to your body and get a doctor that will listen to you.
If the doctors treatment doesn’t agree with you and you still have a gut feeling get another doctor.

Good for you for finding doctors that will help you out!
😉

Rhonda from Canada

Liane, Welcome to The Family. Illnesses know no age limits or anything else for that matter. I have to agree with you on the CClinic opinion, I also was pretty much told I was crazy and doing all this to myself-like I have no life or anything better to do.:rolleyes: I’m glad you listened to your inner self and switched drs, always listen to your innerself(or innerchild as I refer to it;) ). Feel free to ask any questions or just vent when you need to, we know how your feeling and understand. Take Care.

Welcome Robmaninva,

Were you diagnosed with GBS or CIDP? I’m not familiar with CIDP or the residuals of CIDP but I’ve learned quite a bit from this site. Although the Drs. feel that PT and OT is not necessary, I would take advantage of it if you can(especially if you have GBS). Is speech therapy an option? They can teach you different exercises to help strengthen your facial muscles. Sorry if I’m not as knowledgeable as some of the other folks on this site….

Be well,

Tina

Hi Robman, Welcome to The Family. Feel free to ask any questions you have or just vent when you need to. We understand. Can You ask your dr to perscribe pt/ot? You should be getting some, even though you can walk. Exercise is good and it will help teach your nerves the right way to grow back. If you have paralysis in your face still, why didn’t your dr get pt/ot for you before releasing you? Outpatient is good also, aqua therapy helps quite a few of us too. Take care.

Hi there and Welcome. I too am a new member. My Dr. seems to switch betweed GBS to CIDP for my diagnosis. Either way I am being treated with IVIG. Also did PT, it helped alot.
My feet and hands burn and tingle quite a bit especially at night. The nerves seem to go in to overdrive as soon as I am ready for bed.
My Dr prescriber Neurotin and Elavil. It helped the nerve pain and helped me sleep.
It makes you sleepy/tired during the day when you first take it while your body gets used to the meds. Neruotin is used for seizures so I was concerned at first but as long as it took care of the pain I was game.
I also read where some people do well with the drug Lyrica. I think it is for peripheral neuropathy.
I hope you feel better soon!
Valerie

ditto neurontin and elavil take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Rob,

Welcome and I’m glad you found us. This forum is such a wonderful source of information. I do really believe, as the others do, that you should be getting PT. Besides the tingling, do you have bad pain? Reason for asking is that if there is no pain, you shouldnt take meds like Lyrica and Neurontin as suggested.

Has your doctor had any experience with GBS or CIDP in the past? and would you mind telling me what hospital you were in ….. you can always sent a private message to me with the info.

Hi Rob,
I got that message from my first neurologist too – your face will return to normal when the nerves grow back so no speech therapy. I don’t get why that’s so hard for them to do – it doesn’t cost them anything to prescribe it. Sigh. Anyway, I did my own version of speech therapy – or smile therapy I should call it. I still have problems with my face drooping when I am tired but it’s not a constant thing anymore.

Just curious about where in Virginia you live – you can answer through PM if you want – I live in Lincoln and current see Dr. Nguyen at Johns Hopkins but I’ve also been to George Washington University and Georgetown University. Of the three avoid the Georgetown Neurology department like the plague – horrible horrible people – uncaring staff who cancel appointments without telling you and a horrible doctor who told me there was nothing wrong with me. What a goober.

Anyway there are lots of resources on this forum, lots of people who have been through medical mayhem and survived and have good coping mechanisms for the constant frustration. I’m sorry you got GBS but you’re in the right place for information and support!

Julie

Keep at it – use it or lose it my husband tells me. Using a straw helped a lot too, I don’t know about you but it was difficult for me to swallow for a long time but using a straw helped with that and strengthened those muscles too.

I recommend lots of thick milkshakes!

I never thought of using a straw! I’ll have to try that. I still have problems with my throat and such. Was wondering if it was possible to strengthen the muscles and get them to cooperate all the time. Thanks for the idea 🙂

Yeah, nasal regurgitation was one of the nastier things to happen to me early on. Nothing like having soup go up your nose from the back of your throat. NASTY! The straw did help with that, I started using it because my arms were too weak to pick up a cup but noticed it helped over time.

Rob,

Will you let us know what your neuro says about PT and how your visit went in general?

Hmmmmmmm :rolleyes: , sometimes a rant is a “good thing”

Its good to see you’re not ranting 😉 . I’m glad you had a good visit with her, are your hands worse than your face at the moment? How about keeping a record of how you feel everyday, I know its boring and a pain, but, sometimes at this point, having made the most obvious improvements, its hard to tell 6 weeks from now what the difference is between now and then. You may write about your pain in the mornings, and slowly over time, you focus may be on something else, for instance fatigue. My doc got me to do something similar when I started certain meds, and I was amazed at the differences, so subtle that over time you dont remember what it was like a few weeks ago, but reading it makes you realize some of the improvements. (I wasnt that good at writing it down, but I did a little most days 😀 )

Robmaninva,
I know this is going to sound crazy but it is worth a try. I thought that our tinglings might be the same as RLS. A way to get rid of Restless Leg Syndrome is to put a bar of soap or two under the covers with you in bed. I tried it and it took away the tingling. They have no idea how it works but hundreds of people have been helped by it. I told a friend and it worked immediately that night. Plus there are no side effects!
My experience with GBS is quite different than most of the others on this post. I did not get any PT and did not stand up for four months..my choice. I feared that when I did try, my muscles would have atrophied. But they didn’t. When My thigh muscles felt strong enough, I stood for a second holding onto a chair. Then built up the time gradually. I do not have any pain in my legs and I wonder if this is because I did not push my body until it was ready. Most people on this site swear by PT and I respect that, but I wonder if they would need the pain medications if they had waited a few months. I did get some exercise to my muscles by scooting and crawling on the floor. But this was minimal. I am now in my 11th month of recovery from GBS. I think perhaps using some of your muscles in your face would help.
As for swallowing, I used to chew my food fifty times. That helped. I also noticed that if I drank something carbonated, it helped me to swallow.

Hi Rob,

I can tell you are a special person in that you took the risk to post here and share what is going on- a lot of folk just read and miss out on the benefits from contact with others afflicted with this disease, So, you have earned a medal of courage 🙂

[img]http://www.yairmalachi.org/MedalsOfIsrael/IDFDecorations/IturOz/oz_medal.jpg[/img]

I recall what it was like for me during the first year of recovery, remember how scary it can become at times. I can relate to the facial issues in that GBS slapped me in the face first, then the legs and extremities. I found using a vibrator helped me so much in that although the therapeutic effects are questionable, it felt good and gave my facial muscles a work out. That , and it helped my back pain much. Remember, a smile is something that goes on inside even if others cannot see it!

I encourage you to find a hobbies that doesn’t require much effort, Rob. Do you have interests to this effect? I am an Internet gamer, which have given me much comfort when hiking and camping are out of the question. Also, I am an avid consumer of Books of CD/tape. If not, perhaps you could include development of this aspect as part of your treatment plan? If you dig, you will see how many adapt to change in lifestyles, and a few I see her have taken it upon themselves to post here frequently as a part of their own recovery.

Hugs,

Rocker

Hello all,

I am a physical therapy student and I am researching some therapy for GBS patients. I recently had a GBS patient and I felt like I did her a disservice. I was not well informed on the syndrome and my partner who is a more experienced PT knew very little about GBS and we wore the patient out. She was suffering from paralysis from the neck down. Now I would like to know if anyone is willing to share with me what kind of facial exercises are you being taught. What kind of aquatic therapy are people doing? Besides range of motion what else is done for returning function?

Please help…eager PT student who wants to learn and be beneficial to my future GBS patients..

PS any good books that anyone recommends would be great!!!

thank you

Maria T. ~ bxrgrl27

Rob,, glad to read you are on the ball and have considered hobbies pertinent to your change in lifestyle. Kudos!

Maria,

It might be best to start a new thread to this effect, so others will see your request and sound in.

As for my own experience ten years ago, I received speech therapy, which included facial exercise. I went through the vowel gambit- the Bs were tough- and as my body repaired itself most of the muscles began to function, other than my left eye lid and lower left lip. I did not receive any PT to this effect, but I did receive medication from my neuroptomoligist, who said there is little treatment can do to repair facial nerve damage.

On a related note, even if a recovering person shows normal muscular response in terms of capabilities they might experience fatigue of the muscles caused by nerve sprouts that try to get the tissue connected despite the damage (see link below). I did use a vibrator, which may have helped in regard to atrophy aspects.

I hope new treatments have come to the forefront of PT in that my PT did not know much about GBS or how nerve damage effects the body. I am glad to see you are on a quest for higher knowledge and hope you share your findings with the recently afflicted.

Rocker

[url]http://www.jsmarcussen.com/gbs/print/residual3.htm[/url]

Rocker,

I will do that thank you so much. I chose this profession because i want to make a difference and help. But I also vow to myself and my future patients that if I feel like I am getting burned out..I will take a vacation so that I dont take it out on my future patients.

Eager to help and make a change.

Bxrgrl27~Maria T.

Hi Rob,

I was in the same situation and I can tell you it will get better in time. I was dx in Aug of 05. Complete facial paralysis. Reading your post reminded me of what I used to think, I cant believe how many times you smile or raise your eyebrows, until you cant. Speech therapy did alot for me, but if you cant get it, try reciting the alphabet. pick different words and take note of the letters and words that are giving you the most trouble. Im pretty sure it will be m, b or p. Get a list of words with those letters and practice them. My wife used to take pictures of me once a week and you will see a dramatic change in a short time that feels like forever. How is your vision? That was my worst problem because my eyes were paralysed and I was seeing double for about 3 months. My recovery took about 3 to 4 months so be patient, get rest regularly and hang in there.

Coach

Hi Julie,

I was reading up on some posts to see if I can find anything to help my father. I saw that you wrote it was difficult to swallow for awhile. My dad has not been able to eat for 5 months now. He was starting to eat soft foods and then got dehydrated so they stopped that. What would you recommend we try and do or tell him what might help him get the swallowing back. I know it will be slowly, but again this is going on 5 months. Thanks for any replies. Kim

Hi! I read your thread. Yes indeed you have some symptoms exactly what I had when I had GBS at 18 years of age. I am 40 now working as a RN case manager. When I had my GBS, it started with my eye(ptosis) then face, can’t smile, can’t blink, cant close my jaw then it went down to my respiratory muscles, can’t breath (vented for one month), then to my legs. From time to time I think that I am lucky to recover with few residuals such as my muscle atrophy on my fingers and my absent deep tendon reflexes. Few weeks ago(August 2007) I had flu-like syndrome which is unsual because it’s a summer flu like syndrome. During that week I had new onset of electric shock feeling on both of my legs and linear problem. I felt like my home was sinking and tilting. I still have those electric shock feeling on my legs as of today but with less intensity. I saw my neurologist and all he said is just the basic nursing care which I am fully aware about. I felt that I was just wasting my time to see my neurologist. I am not quite sure if there is anyone out there post GBS who had a flu like syndrome and experience linear problem and electric shock on both legs. I am not sure if I am developing a new onset of CIDP.

Rob,
I’m so glad you have things to do that can distract you from your disease, what online games do you play? As I’ve posted in other places when I feel up to sitting at the computer I build things on Second Life and it distracts me pretty well. And you can’t underestimate the power of loved ones for making you feel better. Watching your kids play (watching my dogs play) can have a great emotional boost.

Kim,
I’m no expert and nobody in the hospital had a clue how to help me with this but here is what I did. In addition to practicing the movement of swallowing and speaking before I could actually swallow real food, I also started with soft foods. For months and months everything I ate was blended up with plenty of water, juice, sauce, whatever it took to liquify and go down easily through a straw. Strangely though for me the thin liquids were more difficult to swallow as they usually went backwards up my nose (gross I know) so I started adding a thickening agent (you can use unflavored jello, or starch) and that made it easier to swallow. If your Dad is still in the hospital then he could get a regular IV drip (saline) to combat the dehydration, I ended up asking for it because I felt I was too dehydrated too and it made a big difference. Since I wasn’t sure how much nutrition I was getting I also drank Ensure to add on what I might have been missing. I still use a straw to this day and I still have trouble chewing sometimes so I cut my food very small in case my jaws are too tired to chew. You need the enzymes in your saliva to help digest your food so you don’t want to completely by-pass the chewing but it does get tiring and I will frequently stop mid-bite to rest. Your dad needs to practice eating whether or not he can actually swallow food if he keeps the muscles from forgetting how it will be easier on him in the long run.

And here is something I wish I had done also but didn’t think of until much later. Parents all over the world teach their babies how to eat and watching my friend and her infant a few weeks ago made me think how stupid I was not to get baby forks/spoons, a sippy cup etc. as they are designed for little tinies who are just as clumsy as I am and who are learning how to eat like I was. And baby food doesn’t taste all that bad either and probably has more nutrition than what I make. 😉

Rob keep practicing, I still have trouble with M and B and P but I found that teaching my computer to recognize my voice helped a lot too – you have to be pretty consistent in your pronunciation for it to recognize your voice correctly and since my fingers get numb when I type I wanted to train my computer to type for me. Now I can sit in Quicksand, my lounge chair, and dictate to the computer pretty easily. It’s not perfect but it does let me know what I need to work on and I’m able to make reasonably long posts without too much editing. :rolleyes:

Take care,
Julie

My cidp began with numbness in my hands, bothersome
but I could live with it . Finally saw doctor and got splints for what I thought
was carpal tunnel disorder. Of course they did not work .Time went on and I
began to experience numbness in my feet. Wentto thedoc again got a1c blood test for diabetes, because Iknew about diabetic neuropathy. Next came
the drop foot and several falls,luckily Iwasnt seriously hurt. With the help of
some wonderful people Igot to a very experienced neurolgist.LUmber puncture
and nerve cuductionspeed testEMG.Diagnosis cidp; cure IVIG;so far so good.
I do have some residuals how ever. Hope this helps

[QUOTE=joe flaherty]My cidp began with numbness in my hands, bothersome
but I could live with it . Finally saw doctor and got splints for what I thought
was carpal tunnel disorder. Of course they did not work .Time went on and I
began to experience numbness in my feet. Wentto thedoc again got a1c blood test for diabetes, because Iknew about diabetic neuropathy. Next came
the drop foot and several falls,luckily Iwasnt seriously hurt. With the help of
some wonderful people Igot to a very experienced neurolgist.LUmber puncture
and nerve cuductionspeed testEMG.Diagnosis cidp; cure IVIG;so far so good.
I do have some residuals how ever. This whole process
took years. Hope this helps.[Iam one of the luck ones who respond to IVIG so well/QUOTE]

Hang in there.
I was dx with ms for 6 years, (numbers on LP only) then i started having little seizures and my pcp referred me to a new neuro. behold, you don’t have ms, you have cidp.

what a shocker…..

For 1 year i went through rehab. bed-ridden to wheelchair to walker to cane..
it was the most difficult time in my life, i wanted to give up.

my new neuro said i experienced gbs at that time. i was lucky he told me i didn’t have more breathing probelms. lucky? i had been told to go home and put my affairs in order! i wish i had the energy to go back and fight everything but life is too short and the paperwork fills my file cabnits….lol

Ask alot of questions and i wish you luck…please keep us posted on your testing.

Christina you have a bit more investigation required. CIDP/GBS show reduced muscle tone, reduced tendon reflexes and negative Babinski (that is toes point down when sole is scratched) a positive Babinski where the toes point up shows the disorder is spinal cord or brain. CIDP/GBS are peripheral neuropathies, not central disorders, so you have no features of CIDP/GBS Best wishes, DocDavid

Hi Christina,
If it does turn out to be ms, look up on the members list of names grawplr, he has recently posted some info regarding some vaccine that helps with ms. Experimental at this stage, I have no idea about it, but it did sound hopeful, I thought I would pass that on.
Dawn Kevies mom 😮

Hi Rakshanda. I wish I didn’t have to welcome you here – it would mean that GBS hadn’t invaded your life. Many older people get and recover from GBS – my Mom is 73, diagnosed 34 months ago. She continues to improve. Hang in there and expect things to move very very slowly, but they will definitely move forward. Keep believing that! I hope your dad continues to progress so well.

Welcome! You’ve come to the right place! There is a wealth of knowledge and a lot of great people on this forum, who will support you through this difficult time. I will keep you in my thoughts and prayers!

Welcome to the family, we are here to help however we can. You all are in my thoughts and prayers.

Jerimy

Hi Rakshanda, Welcome to The Family. Age has nothing to do with the recovery time, length, or speed. Everyone is different, and recovery is very individualized also. A positive attitude and atmosphere is absolutely the most important element in recovery. GBS stands for Getting Better Slowly-no matter the age. Some people recover rapidly, some really slow, and yet others in between. There is no way of knowing when, where, or how long recovery will take. A Journey of 1000 miles begins with 1 step. Keep the Faith, treat all pain, treat depression, and recovery will follow. Take care and please send Your FIL my best.:)

It is good that the family is there with him through all the stages- physically and emotionally. My mom is 78 and has been in the hospital for 10 weeks. When I first came to this web site, it didn’t seem like there were that many older or elderly people affected, but there are many. Stick around the web site- everyone here is so kind and supportive.
Your FIL and family are in my thoughts.

Be patient with the moodiness, he is probably exhausted most of the time and that makes everyone crabby. Not to mention that he has had to face a huge lifestyle change in a very short period of time. It took months before I was rested enough not to be crabby or short with people. I needed naps like a 6 month old, about every 2 hours. 🙂

Good luck and keep posting, everyone here is very supportive.

Julie

Hi Karla,

Welcome to our family 🙂

I can’t think of any reason your husband shouldn’t get a flu shot. It is not recommended for us to get them though. I don’t have any information on taking herbs, I know others on here have used them so hopefully they will respond to you on that. Since I got CIDP 3 years ago I always try and practice Monk-like behavior (the germ freak guy on the tv show), I wash my hands alot, use alot of lysol wipes and try to get lots of rest. So far so good for me I think that has helped me a great deal.

Anyways, welcome and we hope you keep coming back.

Jerimy

[quote=K123]Hello Everyone!
My name is Karla and I am from Illinois. I got diagnosed with GBS Sept. of this year. I really am not for sure how I got it. Although I had a cold about 2 – 3 weeks before had. I had IVIG treatments started the day they diagnosed me. I have read a lot about this disease. Finding this site and reading about other people’s experience is so much help. I know I am not alone in trying to fight and overcome this disease. I always say everyday “Think positive and positive things will happen” I wholeheartly believe in that. 🙂

Right now the Dr. Has currently got me on Augumentin 875mg due to my daughter caught a cold and my WBC went up, Dr. didn’t want me to relaspe. Any information would be greatly appreciate on this drug.

I have a couple of questions, hopefully I can calm myself downon the little things that is bothering me.
1. Should my husband get a flu shot this year?
2. Does anyone here take any herbs to help with this disease? If so which ones? Brand name? How often?
3. Cold and flu season upon us preventive measure should I prepare myself so that I do not relaspe?

Thank You Everyone!!
Karla[/quote]

hi karla & welcome,

i take amantadine all winter to help keep type1 viruses at bay. do not take the flu shot. take care. be well.

gene gbs 8-99
in numbers there is strength

[SIZE=”2″][COLOR=”Purple”]Hi Karla, Welcome to the site. Glad you found us! I agree with Jerimy. During cold and flu season the best defense is good handwashing. This includes everyone in the house to be successful. Also avoid people from the outside if possible who have or are getting over colds or other sickness. I stay away from groups because it never fails there will be someone in that group who is sick. As far as Augmentin, it is an antibiotic that works very well on lower respiratory infections, pneumonia, sinus and such. It won’t work on colds as they are a virus, but is given for treatment of the complications such as I mentioned above. I’m sure your doctor gave it to you as a preventative measure. I don’t use herbs so I can’t address that, but others have and I’m sure they’ll come on and share with you. Take care, Vicki:) [/COLOR][/SIZE]

Hi Karla,

Welcom! Only a small percentage of GBS’ers have relapses and if you do get a cold or flu doesnt mean that you will have a relapse – just dont want you to stress too much about that, because even though it can happen, there is a bigger probability that it wont.
Regarding the herbs ….. I know that there are certain products around that are not recommended for people who have had GBS. I’m sorry, I dont know which ones they are, they have been mentioned somewhere but I cannot find the names at the moment. If I come across them in the future, I will post there names for you.

Hi Karla,
It’s pretty rare to find somebody on here from Illinois.
As Everyone has mentioned, we are not supposed to get the flu shots. I put myself on a Google Alert for Guillain-Barre and am getting daily e-mails, (since it is flu shot season) about ‘not’ getting immunized if you have had GBS. It’s been another good imformational site.

I’m from Northern Ill, about 90 miles west of Chicago. Have you found any good Neurologists that are current on GBS?

JayDee

I was being treated by a nutritionist, taking lots of supplements, when I was smaked in the head with GBS. I have had a miraculous recovery. I don’t know if I should credit the nutritional sups with the recovery, or blaim them on the onset. I guess they can’t hurt, but I feel as healthy not taking them as I did when I was taking them. I prefer good fresh food, healthy living, and a wee dram of whiskey.

vmac,

Can we up the “wee dram” a bit? If so, then count me in to your dietary guidelines.

On a more applicable note, I have found that I do much better when my wife (a vegetarian) cooks fresh vegetables, fruits, whole grain breads, and grilled meats as compared to processed foods … it just seems to provide more energy for me throughout the day.

Best wishes
doug

VMAC – I too was taking 22 vitiams/herbs/minerals from Dr. Perricone when I got hit with Miller Fisher – of course immediately stop it – I now have started taking a small dosage vitiam/herb/mineral supplement for the mylin sheathing, flexseed oil and thats all.
Sally

K123 – my Health Food store found a supplement for me to take called ‘Planetary Formulae’ it is for the myelin sheathing, etc. I read the write up in it and feel very safe with it – although I have only been on it a couple of days – never the 22 vits. a day thing again.
Sally

Hi j,

Am so sorry to hear about everything that is going on with you. You really need the IVIG to try and keep CIDP under control as much as possible. Have they tried different brands of IVIG? It seems to me like you may be having a reaction to the IVIG they are using. Hopefully a different brand will cut down on the side effects for you.

If you need any help or advice with the SSI/SSD process please feel free to email me [EMAIL=”jerimyschilz@hotmail.com”]jerimyschilz@hotmail.com[/EMAIL] and I will try and help. I was finally approved for complete disability after 2 years. I am 36 so just a bit older then you are but I can relate to all the feelings your having.

Get ahold of me if you need to and take care. We are glad that you found us.

Jerimy

[quote=jpolson1]Hi all!

I was diagnosed with CIDP about 3 months ago, after about 4 years of trying to figure out what was wrong with me. I had a medi-port installed about 3 weeks ago and had my first IVIG treatment last monday. Unfortunately, I was hospitalized tuesday night with what appears to have been aseptic meningitis. They couldn’t confirm the meningitis because they couldn’t do a lumbar puncture. My blood was too thin due to coumadin levels used to treat antiphospholipid antibody syndrome. Now I’m off of IVIG until at least august, which was the soonest I can get it to see my neuro again. I’ll be honest. I’m having a tough time with all of this. My CIDP has caused me to file for disability SSDI. I can still walk, although with a cane and my CIDP appears to be relapsing/remitting type. I really afraid to go back on the IVIG after last week. Two nights in the hospital with dilaudid every 2 hours for the massive migraine and medication for the nausea just don’t seem to be worth it. I feel a little lost here. Is the IVIG really worth it? Will it just stop the CIDP from progressing, or will it help my condition to improve? I’ve been slowly progressing for 4 years now, with a few remissions here and there.

SSDI has been denied once, is in appeal, and we’re about to lose our house. I’m bipolar to boot, though that is mostly under control, but it’s getting harder and harder not to get depressed. I’m only 34 and feel like my life has been stolen from me. I have almost no energy left and can barely get through a day of doing almost nothing. My wife’s insurance company is giving us the royal runaround and seems to stick me with half the bills half the time.

I just don’t know what to do any more.

Thanks for listening to me gripe.

jpolson[/quote]

Hi J listen to Jerimy he is very good also what should be mention beside the different brands of IVIG also make sure they don’t give it to you to fast. I think the drip should be no more than 150 ML an hour maybe only 100 ML but you work your way up to that rate. I have heard people say when the drip is to fast because the nurse try to rush the job it makes them feel really sick. Also some people take Benedril or something like that before the infusion to help them.
Good Luck to you

Sue

J, You poor guy!

I think I know what you’re going through. I had the same reaction to my first IVIg infusions (high fever, terrible migraine, vomiting, etc.) for 5 days following). Ask your neuro about pre-medicating with solumedrol or decadron (IV steroids) each time. In my experience, I have very minor side effects with decadron, although the trade off is, as others on this forum have found, too, a big emotional crash for a day or two when the decadron or solumedrol wears off. I guess that could be even harder for you with the bi-polar complication.

I have the progressive kind of CIDP and probably couldn’t walk at all by now without IVIg every two weeks and 10 mg of prednisone daily. If your’s is relapsing/remitting, maybe you won’t need IVIg for long.

Sorry about your denial for SSDI. I’m just about to apply for the first time and am following Jeremy’s advice to submit all my medical records with a cover letter from my internist summarizing all my medical conditions that keep me from being able to work.

Being sick and disabled and having to use energy to fight for benefits and insurance coverage can be exhausting and demoralizing. Just know that you have friends out here who understand and are always ready to listen and commiserate.

J, you probably did have aseptic menigitis from the ivig. i had that reaction and went through the lp and i can never have ivig again-next time could be fatal, been there and done that already don’t want to go there again soooo soon!! if you had all the pre meds and still had the a.m. reactions, i wouldn’t take the chance if i were you. pp would do about the same results as the ivig would do, so why not give that a try, all thou you may have a problem with that also-you never know. 🙁 don’t give up. take care.

Welcome!

This site is very helpful – particularly because we have the opportunity to read about what others are experiencing.

I also have CIDP and talke cellcept and have an ivig treatment every two weeks.

I had a treatment this past Monday and I had side effects that lingered off and on for 4-5 days following the treatment.

Keep reading this site. It’s marvelous!

Best,

Brad

Welcome, You Will Find This Site Becomes Very Importent To You.

Even Thought You Have Family And Friends, They Dont Understand What We All On This Site Go Though.;)

I am so happy that you are here. The people here are great, you will make many new friends. If there is anything I can do just let me know 🙂

Jerimy

welcome herself, glad you found us. my sister use to live out that way and worked at Deaconess for 20 years. take it easy.:)

Welcome , herself, to this board. You will find it most helpful. I too am on I V I G. Fortunately, I have no bad side affects. In fact sometimes I feel like I’ve just had a bowl of Wheaties ! It energises me. I am also on immuran and prednisone. Just tried to reduce frequency of some things, but got into trouble with that. So I will stick with the plan for now.
Mary Ann

So glad you found us!! I know it truly was a godsend to find this support group. I coudl never understand support groups thinking that if my family can’t help me, how could strangers. Then I realized that the people in here not only know what I went thru but what I am currently going thru.
I do IVIG and have to live on Excedrin migraine for the headaches for about 5 days plus live with the flu-like symptoms as well for a few days.
Since the Exedrin keeps me wide awake, I get a chance to catch up on the forums:) I’ve found something positive in all this and the biggest has been this group on a whole.
I have 3 ‘aunts’ – Auntie M, Aunt Brandy, and Aunt Liz who always offer such great advice. I enjoy Lee and Marc with their words of wisdom. Jerimy is so darn happy all the time how can you not smile. Allaug, hauts and some of the others I met just before the old site went down were added to the list. It truly is a wonderful place in here!

Gotta love the happy pills my Dr gives me 😉

[quote=badmommy]……..Jerimy is so darn happy all the time how can you not smile….[/quote]

when you have the ivig do you take tylenol and benedryl prior to it? i also found out drinking coffee or tea during the infusion cuts back on headaches and such.

larry

I learned by now that we are all a bit different and might react differently at different times. 10 days ago, before each IVIG which I received on three consecutive days, I got Tylenol and Benedryl. Yet, this time I had flu-like symptoms, body aches, slightly elevated temperature, fatigue for five days. It was all very frustrating. Last time I had an IVIG symptoms only lasted one day.

I always premedicate with 50 mg of Benedryl and a Tylenol. I’ve had some variations in my side-effects and tried to keep a journal to pinpoint what worked. The Exedrin migraine helps as does coke as I don’t normally drink caffeine. Although the caffeine gives me a ‘speed’ like effect, it is better than the headaches. I also found drinking plenty of water or eating popsicles helped as did not bending over.
I used to also get solumedrol (spelling) in my iv prior to the ivig but being pregnant, they have cut it out. I haven’t noticed a difference without it.

Hi Herself and welcome to the boards.

I tried IVIG and had to stop due to no help, mouth sores and dangerous drop in blood pressure.

Tried Prednisone, did nothing.

Am now waiting for them to set up plasma pheresis. If that does not help I go on to chemo drugs.

So far, I have continued to progress from the onset and just got a walker rollator.

You will love the site. Lots of helpful and loving people here.

Blu

Hi,

I’m suffering from an ivig “hangover” today -achy, violent headache, flu-like symptoms. Had mine yesterday. Because I’m prone to full body allergic rash – I tried ivig several years ago and became hideously allergic, then switched to plasmapheresis for 3 years and now back on ivig for the past 10 months with no rash because I’m premedicated with a liquid steriod. The steriod helps to prevent the rash. Sorry, I forget the name of the steriod.

So, the steriod prevented me from sleeping last night, plus I’m achy and have a head that even imitrex, migraine medicine won’t fight.

Blah, blah, poor me!

Anyway, hydrate, hydrate, hydrate by drinking lots of water before, during and after the treatment. Pretreat with benadryl and tylenol as others have posted.

Plan before you get home from the doctor by having rented funny movies, comfort foods and frozen treats! I prefer sorbet – Ben and Jerry’s and Haagen Das have some great ones out! I don’t know if this actually helps medicinally it sure makes me feel better mentally!

Best,

Brad

Hey herself,

I am glad you found the site. For me, it was difficult dealing with CIDP alone. With the incidence rate of 1 or 2 per 100,000, it is unlikely you will bump into another CIDPer on the streets. Without anyone to share with, it is a lonely condition.

After finding friends here, and learning more about CIDP, I began to learn more and more about how to deal with and live with CIDP.

The folks are great, more and more of them are getting back.

I’m sorry you have the need to be here, but the support here is tremendous. I am glad to meet you.

Dick S

Welcome Herself,

I wish I could give you good advice about CIDP but I’m from the GBS side and really don’t know enough.

As for the forums, they are a place of healing and of friendship. We talk with people who understand; we cry; we laugh. Most importantly, we can tell each other the truth.

God bless you,
Auntie M

Welcome Herself,
.
Glad you found us! In addition to the great emotional support our site offers, you’ll find simply the BEST information here. Members are great about posting new articles, studies etc. about GBS/CIDP and sharing solutions to common problems that many of us face. I’ve learned so much here. It’s also a great place to check with others about symptoms you have that may or may not be related to your illness.

Suzanne aka SuzyQ