Happy holidays Stacey. Good to see you here again.
Laurel

Happy Thanksgiving Stacey

Good to see you again. :p
May you have a delightful Thanksgiving.

Hey Stacey,

I hope thins are OK. I know the CMT is also progressive and I wish the best from the bottom of my heart.

Did you have an EMG or Nerve Conduction Study when you thought it was CIDP? I was just curious what the results showed, (if you had one)

have a great holiday.

Dick

Happy Holidays to you too, Stacy!!!!

[FONT=”Microsoft Sans Serif”]Welcome and I am so sorry you are dealing with these health problems–CIDP and your back issues. Neither can be any fun.

There are many here with lots of good information to share and I hope you will avail yourself of what the better part of this forum has to offer.

Of course there are never guarantees, but ever since the FDA approved IVIG for the treatment of CIDP, it is (I think) rare to be denied it. Anyone out there, please feel free to correct me if I am wrong here… My guess is that you will get it approved, albeit in their own time.

There’s a wealth of information on threads from years of posting that hopefully will help you in understanding your condition better.

In my case, IVIG didn’t work and I sought Stem Cell Transplant as my eventual course of treatment. I am pleased to say that I have been symptom free and off all meds ever since (10/09).

Again, welcome and I wish you well.

Alice[/FONT]

Welcome.

IVIG is the standard first course of treatment for CIDP. If your dr contacts your insurance company I’m sure you will be approved.

I know what it’s like to be overwhelmed by the dr visits. When my daughter was first dx’d (she was 4), she was seeing 5 different dr’s & 3 of them wanted to see her weekly. Thankfully we only had a $5 co-pay for office visits then. I cannot imagine how we would have done it if it was more.

One thing I tell new CIDP’ers is that Google is your new best friend. I used to spend hours on Google learning all I could about CIDP and IVIG. I think a good place to start is to Google Dr. Dyck out of Mayo in Minnesota. I really like his approach to IVIG.

Would you mind sharing a little bit about your symptoms? I think it helps us all to know what others are going through.

Kelly

I know how disconcerting and overwhelming it is to take in the news of your diagnosis. I had never even heard of CIDP and was totally in the dark – my diagnostic doctor handed me approx a half page of information on CIDP and that was all. I felt so lost … but this forum is here to help you find your way through both information overload and underload!

As you go forward with treatment and/or med options, you can use the search on the toolbar to look for previous threads regarding that option and get input from a variety of people that tried that same option also. It gives a broader picture of what you might expect and can help you to weigh your options. Not everything works the same for everyone.

As for venting, well, that happens here also!

I hope the insurance approves quickly and that your back surgery goes well. Please keep us posted.

Good luck with your loading dose of IVIG Doug. My husband has CIDP–MADSAM (most motor symptoms with atrophy of the rt. hand/forearm and foot drop rt. foot). He has been on IVIG every 3 weeks since 2007, and the IVIG did prevent further atrophy and weakness but just maintains him from deteriorating further. We learned from people on this forum the importance of drinking lots of water starting a couple of days before treatment, during treatment and for a couple of days after. You want to avoid the terrible headaches that the IVIG can cause as it is such a viscous substance. In the beginning he always pre-medicated with taking a bendryl so he didn’t get a rash and he took a couple Naproxsyn as well. Now he doesn’t need the bendryl or the Naproxsyn. But he drinks the water religiously. If you start to get a headache, tell the nurses and they will give you something and also ask them to slow the infusion down as often if it is run too fast that precipitates the headache. Good luck and let us know how it goes.
Laurel
PS Hubby just had a Power Port put in a week ago as his veins got too bad. He had his first treatment of IVIG with the port yesterday, and loved how smoothly it went compared to them poking around several times trying to find a vein.

To answer your question…CIDP is an autoimmune disease. It’s kind of thought to be the cousin of MS.

As for your infusions, I have a few tips.

1) As Laurel mentioned make sure you hydrate, hydrate, hydrate! I cannot tell you how important that is. Make sure you hydrate starting 24 hours prior to the infusion & continue on 24 hours after your last infusion. It really makes a difference!

2) Along with the Benadryl that Laurel mentioned, most people take Tylenol or Motrin as a premed. Since you are getting a loading dose, I think it would be wise to ask about taking the meds around the clock for the 5 days…just to be on the safe side. Also, IV Benadryl tends to burn like the dickens so, if you can, I’d suggest asking for oral Benadryl. And make sure you are given the meds at least 30 minutes PRIOR to your infusion. So that way the meds can start to work before the infusion starts. This is VERY important for people new to IVIG.

3) An IVIG infusion should start off slowly & then be ramped up periodically. When the pump speed is increased the nurse should check your vitals EVERY TIME! (heart rate, breathing, blood pressure, & temp) If any of your vitals change drastically the infusion should be slowed down and/or stopped. (for most people though it’s not a problem…it’s just precaution.)

4) I HIGHLY suggest starting a binder. You can store all of your dr’s notes, blood test results, IVIG batch info, etc. (Every bottle of IVIG has 2 stickers with batch & lot #’s. The hospital/home care company should keep 1 &
you should keep 1 for your records as well)

5) You mention you are a diabetic. Ask your dr what brand of IVIG you are getting. It’s important for diabetics to make sure to NOT receive a brand that is sucrose based.

Thanks for sharing your symptoms. My daughter lost all of her reflexes too. She has gained them back. There were times, in the beginning of her recovery, where it was nearly impossible to get a good reflex on her but now they are fine.

Has your dr ordered any meds for nerve pain? Do you know how much IVIG you will be getting every day?

Kelly

Doug, Kelly is our number one go to person for CIDP facts and for support. Her advice is the best you will get from anyone.
Laurel

Doug ~ I wish you well with your IVIG and back surgery.

This forum is a gold mine of information. While not my only source, where else can a person find so many “been there – done that – got the t-shirt” people willing to share information, experiences, support, and even some humor.

Even though I was diagnosed late in the game and finally put on IVIG – the results, though not immediate, were amazing!!! I hope you have the same experience and better.

One thing no one told me – even after all my research was the infusion pump has an alarm on it and when the pump detects something – like its time to change the bottle – it goes off. I was sleeping when that first happened … well, to put it mildly, I really wish they told me about that!

I relate to your ‘ton of bricks’ comment… and for me I added “Now what?” The answer was that I was able to climb out from under the majority of the bricks, but it took time and patience.

I agree in general with the other replies to your original post, especially keeping a log of information. I kept a diary from day one – and glad I did.

Again, I wish you the best…and hope to read your posts…

Laurel – You are too sweet. Better be careful or I might get a big head 😉

Kelly

I have to respectfully disagree with GH-CIDP.

I believe CIDP is an autoimmune disease which causes peripheral neuropathy. The treatment isn’t for the neuropathy. You treat the immune system which will then help the neuropathy. I, personally, think the more precise term is “autoimmune disease”.

Also, I think Parry & Steinberg are slightly dated in their theories about CIDP. I think a better dr to research is Dr. Dyck out of Mayo in Minnesota (which I think I mentioned earlier).

Kelly

[FONT=”Microsoft Sans Serif”]I agree Kelly.[/FONT]

Doug – You are very welcome. I’ve learned a lot through trial & error & through TONS of reading.

One thing I want to mention first off is you can take your Benadryl with you to the hospital & ask to take it but please do not take it before you go. Your IVIG may not be started for hours after you get there. At our hospital we would have to go to admitting at 8am, wait, go upstairs & get into a room, wait, they would start an IV on Emily (this was pre home care & pre port), wait & then around 1pm they would finally bring the IVIG.

If you take the Benadryl at home & have to wait too long at the hospital you may run into the problem where your IVIG is ready to start but it’s not yet time to take another dose of Benadryl (you have take it every 4-6 hours, I believe).

I think you should either call your dr tonight & request oral Benadryl be ordered or just take your own from home & tell them you will take that instead.

Your IVIG dose sounds good. A loading dose is usually 2 grams per kg so breaking it up to .4 grams per day is normal.

When do you see your dr for a follow up after your IVIG? Will you be admitted to the hospital for 5 days or just have your infusions outpatient & get to go home at the end of each day?

As far as how long you will need to take IVIG…well no one knows. Some people will reach a remission & not need treatment. This usually takes a few years though. Some people can maintain a “normal” life but with periodic treatments. Each person is different. Please do not get discouraged by that. I really truly mean it when I say that MANY people can live nearly normal lives with CIDP. It might be a new normal but life can still be fulfilling.

My daughter is now 10 & has lived with CIDP for 6 years. Granted she’s a kid & CIDP usually affects kids differently, but she’s a “normal” kid. It is possible to have a good life with CIDP.

Also, I forgot to add that all IVIG has sugar in it. Sugars are used as stabilizers. The different forms of sugars are: sucrose, glucose & maltose. Here is a link to a documents explaining IVIG stabilizers: [url]https://docs.google.com/viewer?url=http://www.pharmacypracticenews.com/download/SR1019_Stabl_IVIG_WM.pdf&embedded=true&chrome=true[/url] (Hopefully the link will work!)

Kelly

Doug – Don’t worry about your typing and/or spelling. It’s one of the issues with CIDP & we all understand.

If it were me, I think I’d call & ask the neuro for a follow up appointment sooner than 5 weeks. I say this for a few reasons:

1) He should see you right after your treatment to make sure you tolerated it well & to see if you have any immediate improvements.

2) I think he should see you about 2 weeks after your treatment to see if & what improvements you have made.

3) IVIG is most successful when you can get onto a regular treatment schedule. It’s VERY important to get a treatment before any symptoms return. If you wait until symptoms return then that means new damage is occurring.

4) This goes along with #3, the thinking for treating CIDP used to be to get a maintenance dose every 4 weeks. Dr’s now are being a bit more aggressive & ordering them every 2-3 weeks on average. Some people need them every week. (Emily got them multiple times a week for awhile but she’s an exception not the norm)

So seeing your dr before 5 weeks is optimal.

Now, I know you are probably on information overload today. And it’s understandable because we’ve all been there. I know I’ve given you a lot to digest. Just take a deep breath & try to conquer one thing at a time. I would start with getting a binder started. Then during the next 5 days call your dr’s office & request an earlier appointment.

Good luck tomorrow! Let us know how it goes.

And remember…hydrate!

Kelly

Doug, just another suggestion for your binder. REQUEST A COPY OF EVERYTHING, from doctor notes, to blood work, to insurance papers. I have 3 binders already and I just got dxed in Dec ’10. You never know who you have to show what to and if you keep it up from the get-go you will be much better off.
Sure hope the IVIg works wonders for you and that your surgery goes well also! God bless.
Wendy 🙂

Hey Doug – It’s good to hear you had a good 1st treatment. Remember to HYDRATE!

It sounds like you are on your way to keeping a great binder. It cannot stress how important it is. I keep all of our Explanation of Benefits (EOB) that we receive from our insurance company. That may be what Wendy is talking about.

Do you know how many grams of IVIG you received today? And about how long did the infusion take?

Kelly

Doug – Your EOB situation is exactly why you need to keep them in a binder. As soon as you open them, you put them in the binder. It’s the only way to stay organized.

Baxter has binders available for people with immune deficiencies. I wish they would make them for CIDP & other illnesses.

Ask the nurse tomorrow how many grams you are getting each day. It’s important info you will need to know. I can’t remember, have you mentioned what brand of IVIG you are getting? That’s important info to know too.

Emily gets 20 grams & her infusion takes 2 hours 45 minutes.

Good luck tomorrow!
Kelly

Grifols makes Flebogamma – it’s one of the newer IVIG products, I believe.

Emily gets Gammaguard, which is made by Baxter.

Believe me, I know what it’s like when funds get low. I am a couponer & deal finder (otherwise known as a cheapskate, LOL). I refuse to pay full price for anything. You can get a small starter binder at any dollar store. When you are ready to move up to a bigger binder (or when you get the extra funds), look at Walmart. I’ve seen binders for $3. I got mine for free from husband’s work.

When you get the chance you should Google “IG Living Magazine”. It’s a free magazine you can sign up to receive. It has SO much info & it’s a great resource.

Kelly

I’m sorry you had a rough night last night. Remember to not push yourself too much. In the beginning you will take 2 steps forward & 1 step back…it’s just the way it goes. Emily did the same thing & it about drove me nuts. But it does get better!

As far as your personal question…it’s probably been asked on this forum. I’m going to assume it’s a “dude thing” and I probably won’t be of assistance. So hopefully someone will be able to help you. If no one does then send me a PM & I’ll see what I can find out for you.

Kelly

Hi Doug,
Hope you are feeling okay. By the way, the binders I have are not full yet, I use 3 different ones for different topics. One for doctor notes/blood work, another for insurance (yea EOB and everything else), another for social security and my long term disability. I got binders from the dollar store too. understand the money thing. If you can’t get them right away at least make piles of each group with newest info on top.
Hope that helps too.
God bless,
Wendy 🙂

I agree with Laurel, Kelly is a wealth of knowledge!

Kelly, Thanks for being there ready to help.

I just want to take the time to thank everyone for being so helpful.

Without this forum I would be lost.

So thanks to all of you for taking the time to help and care.

Rhonda

well said Rhonda 🙂 —–“dido” that whole message.

My name is Tim McClure and I am from the Sunshine Coast in Qld. Australia.

I contracted CIDP in July 2009 and was not diagnosed until August 2010 – after several visits to many doctors and being hospitalized at several different hospitals – on many occasions.

I was finally referred to a neuroligist in Brisbane, who diagnosed my condition within 5 minutes, and referred me for electrical conductivity tests and a lumbar puncture to confirm his diag.

I seem to have coped the lot, autonomic, sensory and motor nerve damage, although I do not appear to be nearly as bad as many of the others on this forum.

I am currently on fortnightly IVIg (39gms in a 650ml solution) and take 20mg of Methotrexate tablets once a week. I have also previously had a loading dose of IVMP, followed by an oral weaning dose of steroid tablets. I do appear to be improving but the progress is painfully slow.

My fortnightly dose of IVIg takes approximately 3.5 hours.

Doug, don’t let any questions embarrass you, most have been through many problems, some embarrassing, but rest assured that everyone is affected by this disease in many different ways.

Bladder and bowel function can be impaired as can erectile function. My most debilitating symptoms throughout have been constant bad cases of dizziness and headaches but it appears that this is not very common. (I think I read a post from someone called Bethany in an earlier post who had the same problem).

I have also been through severe leg pains (hamstring muscles) earlier on but they went away only to return again a couple of times, but becoming less painful. Many other pains have come and gone – hopefully for good.
I cannot type much longer this time because it is increasing my headache and dizziness.

Keep your chin up – sometimes I know that it can be very hard and trying.

Tim

Doug –

In our family, our mantra is that we have CIDP – CIDP does NOT have us.

It will be a part of your life forever. Whether you have CIDP symptoms forever, or not…well, no one knows. It just depends on how you handle it as to how much affect it has.

Kelly

Are you seeing a pain specialist?

I know you are probably overwhelmed by seeing dr’s but I think it would be a wise decision to see someone who specializes in pain meds. That way you know you will be dosed correctly & they will be able to do so in a way that will prevent you from becoming addicted.

I’m sorry you had a rough night. Hopefully you got some sleep.

Kelly

Hello – I am sorry you have began experiencing these problems after 14 years. There has been a lot of discussion about “post GBS” syndrome flaring up many years later. I invite you to post on the main forum – you will get more attention from the general population here and perhaps a better answer. I cannot be of any help since these sensations never cleared up for me in the first place. I hope you get answers and would like to hear from you again on how you are doing now.

Toni,

Your sister is lucky to have such a wonderful supporting family.

Hopefully with time things will start to get better, she is now out of hospital and at home.

Have you contacted a CIDP/GBS liason in your area?

There may be a support group.

Try to look after yourselves as caregivers so you don’t end up burnt out.

Keep your chin up and keep writing us to let us know how things are going or just to rant!

Take care, give everyone big hugs

Rhonda from Canada

Am so sorry for your sister, but how fortunate she is to have all of you for support. I am doing alone what the 3 of you are doing and have been now for over 2 1/2 years with no end in sight. However, I don’t have the added complication of a new born.

There’s no relief, but what I have found (I work at a full time job, too, but can juggle my hours) is that each day is prioritized and many, many things are left undone. If the house payment/utilities are lagging, that’s my priority for the day. There are one or two issues that rise to the top and every day will be different and don’t try to make yourself get to all of it.

After I finally got the Medi Cal in place (it’s LOUSY but it’s something) and finally got a little disability for my daughter it left me time to get to my customers. But then I had to rearrange each day for dr. appts, pt appts, and 1x 3 wks for plasma exchange. We are fortunate to have home health come out and flush the perma cath once a week on the weeks when there’s no PE. Food preparation, laundry, cleaning handling meds, trips to pharmacy, bathing take up a lot of the day. I should not take time to check out the Forum and most days I don’t. I found that we can to PT at home just as well as hauling her off some place for it.

You must find a rythym(sp?) for all this. One day at a time is not enough time off, it’s no time off, but when you have that day make the most of it for yourself. I feel very short changed out of what little joy life has to offer these days. Everybody wants to feel sorry for the patient, but the patient in my home is cared for better than I am. I feel like everything, money, time, energy, goes to her! Facing each day is a challenge, some days I can, some I can’t. There’s no medicine for me, it all goes to my daughter, who is 35 by the way, but no babies (thank goodness).

Remember to be selfish a little, prioritize each day, get sleep and your sister must realize she cannot always be first. The chronically ill tend to take over our lives, those of us that care.

You will be involved probably forever with her.

As far as handicap accessible, it’s pathetic I can’t imagine how people got along w/o any handicap stuff 20 years ago. All the handicap spots are taken by people who aren’t dragging wheelchairs out of the trunk. Many times I end up parking FURTHER AWAY SO THAT I CAN GET THE CAR DOOR OPEN AND THE WHEELCHAIR NEXT TO THE CAR.

I am curious, when did the symptoms manifest for your sister? During pregnancy, just before? There’s something else I am curious about but don’t want to discuss on a public forum. There’s a way to private message me but I am not quite sure how it works. Seems like you can click on private messages above and send me a separate message so we can contact one another that way.

Have you, or someone in the family, been able to get your sister on disability?

nicsmom & tav,

To private message click on your name then click on send a private message. You can also click on view public profile and send email or private message there.

Shirley

Dear Mattyrae, thanks for the heads up on how to PM someone!

Toni, please be sure to check your PM’s.

nicsmom

toni, just know that all of us on this forum have been through different situations like your sisters. Not all that bad, but one thing I will guarantee you is that the caregivers are vital to recovery. Their support has helped lift us up when all else looks so gloomy. Just that encoraging thought or word will make our day. We will pray for your sister and her caregivers. Remember baby steps. One at a time, even though small will be a blessing to you sister, and you can encorage her along. God Bless.

Thanks Drummer for the Happy Mothers Day. Plan on having a very good day.
Thanks again. 😀
Clare in Michigan

Thanks for that.. 😀

Drummer! Thanks for thinking of us Mom’s…. have a great day everyone!

Thank-you Drummer! Gosh! Each year there is a Mother’s Day I end up being a year older! YIKES!
Linda H

Amy,
That’s what friends and family are for. You part of the family. Some days you need support, other days you help support others.

Jim C

Hello there! I’m still very much dealing with pain and side effects from gbs. I don’t know if i’ll ever be the same. I think I might be accepting that my life may be different forever even though I still have some kind of lingering hope. I had a relapse in december and that really scared me. I want nothing more in this world to be normal. I watch people and think of what theyy take for granted……..it’s silly ain’t it? We don’t know how good anything is until it’s takin away………then we ***** and moan. Live life one day at a time. This is even affecting my reationship of 7 yrs. I’m tired of living on pain meds and dealing with the fatigue! I jus never thought it would be me………even though i kinda always had some fear of being a “sick” person. Do we all have that fear? Well how ever ur feeling at this exact time………I pray the blood of jesus on u to be healed…… believe and recieve.

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 would be willing to be e-interviewed. I have Guillain Barre, diagnosed in March. I have not had many upper extremity issues, but have had a lot of issues with continuing to work and was impressed with the occupational therapist that I saw at the rehabilitation hospital. I would consider it a priviledge to help you learn more about this illness so that you can help others with it.

You can click on my name and private message me.
With Hope for cure of these illnesses (Guillain Barre and CIDP) and with hope for better understanding of them.

Hi. I have had the Miller Fisher Varient of GBS two times. If you would be interestied in further info from me I would be happy to comply.
Alma
GBS MFv 1993 and 2004

Hi Pat.
My therpist was so understanding and I was his 1st pt. now he has had 3 more. One thing I told him (do not patronize me) if I was lazy that day tell me of if he felt I wasn’t trying hard enough to get on me. He guided me from a wheel chair to walking on my own in 3 months.We are good friends today and it makes us so happy to see another therpist wanting to talk with us. Yes you are the 2nd student to come here for information. May Gods blessings be with you and we will do anything we can to help you because what you learn from us you someday may use on someone with GBS. (Steve)

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,
I am currently working with an exeptional occupational therapist who has single handedly changed my entire approach to CIDP. I would be happy to give you any information I have re; treatment.
Linda

i would be happy to help! i was diagnosed with gbs in feb 2006. i help a lot of student doctors learn about the condition

Greetings Donuts,

There are a few here from the UK and I believe there is a forum from there?!?! Hopefully, someone will speak up and help me on that one.

Anyway, welcome to the USA family – we really have people from all over the world here. Sounds like you are following a fairly normal path on your recovery. The main thing that I preach about is rest, rest and more rest. I am 10 years into this stuff and fatigue continually sneaks up on me. Take care of yourself and keep us posted on how you are doing.

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.

Hi Donuts,

I love the name (donuts too, Krispy Kremes especially). I am glad you found this sight, it is a great source for inspiration, information and compassion. The format itis set up in is very nice as well compared to some other sites I have visited. The foundation itself is a great source of info and will send you literature and a news letter if you contact them. My ten year old has gbs/cidp, so I only speak from what I have learned and what he explains to me. Many on this sight including my son have the “tired” issue. I would say with your activity anyone would be tired at the end of the day! Try to rest, as you read here more you will learn that no pain no gain does not work with gbs, it has the opposite effect, so you will have to rest. There is a man named Gene, I am sure he will reply, he says it the best, rest rest and more rest!

My son also complained of back pain, that has subsided finally, 8 months post. Is there any chance the pain could be disc related? He never complained about his legs hurting in conjunction with his back. Any chance of an MRI of the spine? Just a thought. Good luck to you!

Dawn Kevies mom 😮

Happy Mom’s Day to you as well, AJ. It’s nice to be needed.
Wnjoy the week with the grandson. We’ll miss you.
Victoria

AJR,
Happy Mother’s Day. Enjoy and don’t forget you and your family are in my prayers.
Happy Mother’s Day, ladies.

I have been looking for a place like this too. I try to get information out of my son. All he tells me is not worry that he’s doing fine. That the same as my husband. It’s great when you can talk to other people.

Hello,

I am glad you found this site also. It sounds like you have made tremendous progress thus far. I am post GBS (May 2005) and you will continue to improve. Some days it seems like every hour something else improves and some days it seems like nothing improved. Be patient with yourself and find something everyday that you can be thankful for as it helps to stay positive.

At this point I have about 95% healing. I stilll have neuropathy in my hands and feet. Some days I don’t notice it but on days that I’m really tired it is worse in the evening. Sometimes I still will get a sunburned sensation down the middle of my back which is also associated with fatigue.

I pray you have alot of physical and emotional support from your family and friends especially since you have young children.

Try and stay positive and know that you are not alone in this illness.

I am glad you found us. We are one big family and everyone will give you support. I got GBS in Jan and had 5 IVIGs and mine was caught in the early stages. My right foot was 90 % numb but now only 30% numb. My left foot is almost normal.
I learned that the easiest way to deal with GBS is to turn it over to God and above all have PATIENCE. As mention some days your healing is by the hr and then you may go for seversal weeks and not feel anything. But you have been healing each day. Go to therpy this is a must if you can and remember. LESS IS BEST.do what your therpist tells you.
I have gone from a wheel chair to a walker and a cane and now walking in less than 4 months. I have been blessed. above all keep your faith and never give up. YOU WILL GET BETTER. My prayers for you and your family– Steve

Greetings to you Newcomers!

I love what Steve put above, but please don’t forget to get plenty of rest, rest and more rest. That is where many of us seem to slip up (even after years) is to take care of our bodies and listen to the signs you need rest. Glad to hear you are progressing well.

We have a saying here… GBS stands for Getting Better Slowly.

Keep posting!

Welcome, we are glad that you found us.

Jerimy

Welcome James and all the other new members. You will find a lot of positive support and good information on this site. Please remember that recovery means different things for different people and don’t put too much pressure on yourself or be disappointed if you don’t get back as much as quickly as you hoped. The greatest wisdom I have found on this site is the willingness to accept and work with our limitations as well as our strengths. Some people get well quickly and others have many residuals for years, but all show great courage in dealing with their individual situations. One thing my pesky nerves have taught me is that I am not in control of as much as I thought I was. Jeff

Welcome to the forum, its a great place for GBSers and people with CIDP to come for support. I too am glad I found this place when I did.

Welcome James! I am glad you found ths forum. It has done wonders for me.
I agree with everyone else. Don’t over do it. Get rest when you can, listen to your body.
Again welcome.:)

Welcome glad you found this fourm. Keep coming back it is a GREAT family and it does really help with all the questions that you may have along the way. Rest is highly important and don’t over do, what you don’t get to today surely will be waiting for you the next day. Take care and be strong.

Hi, I can relate to your experience. I am married, our son is 2.5 yrs old & I’m 38 yrs old. I thought I was very healthy- before GBS crushed me last summer. I had a very severe, sudden onset- perhaps caused by a common cold- the doctors don’t know. It was brutal- not being able to speak or move for weeks. Fortunately, my recovery was considered fast (it felt terribly slow to me but the doctors said it as almost a miracle considering the severity of my case). I left the hospital Aug 9th 06- and I’m still not 100% fine but I’m getting there. It’s a long road of physical therapy, eating properly (protein to rebuild muscles) & reducing stress. GBS is a life-changing event. Hang in there. It’s nice to talk to someone who ‘knows’ what you’ve been through. I just joined this group- because I realize that I have a lot of questions during the recovery period. I have a feeling this forum will be helpful. Best of luck.

I am a CIDP survivor and also a liason for the GBS Foundation. Maybe a visit from someone who has been through it would be good for him and help motivate him to want to get better. We have quite a few liasons in California, if you call the foundation [B][SIZE=2]610-667-0131[/SIZE][/B][SIZE=2], they can put you in touch with the one that is closest to you. Hang in there, you are in my prayers.

Jerimy
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Hi Sonya and Welcome to the forums,

Sounds like your Dad could use some anti-depressant medication, it makes a world of difference for alot of people. Prednisone can cause depression in some people. His refusal for physical therapy is not going to help him at all, but I don’t know what you can do to force him to do what he doesn’t want to do. That’s a hard one.

Take care:)

Welcome, Sonya! Caregivers have a most difficult job ’cause most of the time they don’t understand this disease process any better than we the patient 😮 Just don’t give up even tho if appears that your dad has. A visit from a fellow “sufferer”, someone who can really relate to him, just might be a key. Also, don’t hesitate to print out the info that you think might be helpful to him. You are all in such a frustrating place in life BUT it does get better!

My husband and I have been at this for 12+ years now, and even yet there are small improvements from year to year. Truly, I don’t know how he was able to “stick around” (we had been married only 2 months . . .) but I can assure you that I am alive today because of his love/caring for me.

[I] I hold all of our caregivers here in the highest esteem 🙂 [/I]

I wish for all of you strength and courage. Again, welcome!

This is a late reply to your post from earlier this summer regarding your dad- how is he? And how are you doing?
we have a similar situation at our house, so your post touched me.
Big prayers from Tennessee.
Sigrid and Todd

[QUOTE=Jerimy]I am a CIDP survivor and also a liason for the GBS Foundation. Maybe a visit from someone who has been through it would be good for him and help motivate him to want to get better. We have quite a few liasons in California, if you call the foundation [B][SIZE=2]610-667-0131[/SIZE][/B][SIZE=2], they can put you in touch with the one that is closest to you. Hang in there, you are in my prayers.

Jerimy
[/SIZE][/QUOTE]

Hi Jerimy,
I see that you are a foundation liason, and wondered if you knew of any GBS members from Northern NJ. My partner is recovering from GBS and is feeling depressed and alone with this and has constant pain. He feels like no one believes what he he going through is real. We have changed primary care Dr’s twice already and I think we finally found a good match for him. But if you had someone for him to reach out to that he could relate to, that would be great. Thanks !!! Dean (devans@patmedia.net)

Hi Kass, Glad to see You’re still in the neighborhood! Sorry to hear you have had soo many losses this past year, I hope you are taking Godd care of yourself. If there is anything I can do for you let me know. Take Care.

Kassandra,

So sorry to hear about the losses you’ve suffered this past year. I hope 07 will be much happier for you.

Best wishes,

Suzanne

Hi Kass,

So sorry to hear about all the losses of family and friends. So I’m sending you some big hugs.