Hello !

    • Anonymous
      November 23, 2011 at 1:22 pm

      Long time since I’ve posted. I’m confirmed to have CMT 1a…no CIDP, but, I think I’ve said that before.

      My symptoms are about the same as the last time I posted. I guess I’m lucky.

      I just wanted to say Happy Holidays to all my friends here.

      Well wishes to all,

    • Anonymous
      November 23, 2011 at 4:23 pm

      Happy holidays Stacey. Good to see you here again.

    • Anonymous
      November 23, 2011 at 9:32 pm

      Happy Thanksgiving Stacey

    • Anonymous
      November 23, 2011 at 10:08 pm

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

    • Anonymous
      November 25, 2011 at 10:53 pm

      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.


    • Anonymous
      November 26, 2011 at 9:32 am

      Happy Holidays to you too, Stacy!!!!


    • Anonymous
      November 15, 2011 at 1:50 pm

      Hello to all,

      I am new here and just wanted to say hello. I was told that I have CIDP last week. This hit me like a brick wall. I am scheduled to have back surgery in December. The doctors nurse was worried that the IVIG would keep me from having the surgery so soon after the IVIG. I have not been scheduled for the IVIG because the personal at the hospital are on vacation plus my insurance is dragging their feet on approving it. They may not and if they don’t I will not be able to have it done.

      With all the doctors appointments and everything else this has put a great strain on the money matters. I am just venting right now because I am so overwhelmed.

      Thanks for letting me vent.

    • Anonymous
      November 15, 2011 at 6:50 pm

      [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.


    • Anonymous
      November 15, 2011 at 7:37 pm


      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.


    • Anonymous
      November 15, 2011 at 7:50 pm

      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.

    • Anonymous
      November 15, 2011 at 10:38 pm

      Well first off my hands, mostly my left, go almost numb and I have muscle loss in my left hand. No grip in left hand and the grip in right is getting worse. everyday. I have no reflexes in both knees and both legs burn and my left leg will go numb. I have nights where I can not sleep for the pain.

      On the good side I was approved for the IVIG and will start that Thursday morning and go for five days. I hope that i can get some relief before the surgery. That is a different story altogether.

      The surgery is on my lower back at the L-5 S-1. The root nerve is being closed off and is giving me fits. That hurts almost as bad and the CIDP. There was some worry about the IVIG and the surgery but the neurologist said not to worry, the IGIV would not have any bearing on the surgery.

      Thanks for letting me getting some of the anger and pain off my chest in my earlier post. I am just so overwhelmed.


    • Anonymous
      November 15, 2011 at 10:52 pm

      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.
      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.

    • Anonymous
      November 16, 2011 at 1:33 am

      Thank you Laurel for the information about the bendryl and the headaches. I drink water all day long. I usually drink about a gallon everyday just because I like water. I have diabetes which is under control but when it was not I craved water all the time. I have learned so much from reading these forums but I have a question. Some say that CIDP is a condition and some say it is a disease. Which is it? I know that it is closely related to GBS that is called a disease. Forgive me but I am new to all of this and only found out my CIDP last week. It hit me like a ton of bricks. With my upcoming back surgery in December, to which I will be in the hospital on Christmas day, it was almost more than I could handle.

      My kids told me “Dad your are more important than a Christmas dinner and if we want to see you on Christmas we can come to the hospital.” My youngest son and his wife are in Arizona and hope to to be moved back here to Arkansas by then. All of this is just worrying him so bad.

      I will keep you all posted on what happens with the IGIV.

    • Anonymous
      November 16, 2011 at 10:00 am

      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?


    • Anonymous
      November 16, 2011 at 12:02 pm

      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.

    • Anonymous
      November 16, 2011 at 2:31 pm

      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…

    • Anonymous
      November 16, 2011 at 2:36 pm

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


    • Anonymous
      November 16, 2011 at 3:09 pm

      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).


    • Anonymous
      November 16, 2011 at 3:58 pm

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

    • Anonymous
      November 16, 2011 at 4:19 pm

      Wow! You all really surprised me with all the information you have given me. Kelly thank you for the list of what to dos. I will get on that asap.This is what my doctor is saying the amount of the IGIV is. Or what I think it is. Can’t read his writing. LOL. 0.4 gum/kg per day x 5 days.. I just got off the phone with the hospital and was told that the IVIG has no sugars it it.

      I am taking Lyrcia for the nerve pain but need the doctor to up the amount as I still have great pain at night. The last three days I have been up all night and not getting to sleep until three o’clock am to six o”clock am. Then only getting about four hours of sleep. Getting old real fast.

      Is getting the IVIGs a permanent thing and have to take them for the rest of my life or is it a short term deal?

      I like the binder idea. I will get all the info from the doctors and start one. Kelly I printed off the post of the suggestions and will that it with me tomorrow. That way I will not forget to ask about the important items. I have Benadryl here at home so I will use that.

      Again Thank you all for the imformation.

    • Anonymous
      November 16, 2011 at 4:37 pm

      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!)


    • Anonymous
      November 16, 2011 at 5:10 pm

      GH-CIDP, That is great news. I hope that I am one of the lucky one and get it under control quick. We will see.

      Kelly it is outpatient thank goodness. I am prepared for the long haul if that is what it is going to be. I do not remember when the followup appointment is but I think it is about 5 weeks away. Right before I have my surgery. Sorry if my spelling is bad but my hands get tired and cramp up when I have to type to long. Then I have to use the one finger approach. that takes to long. Or I get a brain fart and really lose control over my fingers.

    • Anonymous
      November 16, 2011 at 5:27 pm

      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!


    • Anonymous
      November 16, 2011 at 6:17 pm

      I will keep everyone posted about the treatment. I just went to help my son get supper started and fell flat on my face. The fall hurt my left hip which is the side that is giving me the most problem. My wife wants to get out the walker that my grandfather had. Now I feel real old.

    • Anonymous
      November 17, 2011 at 10:43 am

      Well I’m at the hospital getting my loading dose. So far everything is going good. The nurse that is in charge of me told me that she only has two others that have CIDP that get the IVIG. The nurse has been great.

      Kelly I have the stickers with the lot numbers. They are on the to do list that you gave me. So far I have had every question answered with no problem. That makes me feel better already. The nurse said I will be dancing by the end of the week.

      They are going to leave the IV in for the rest of the week.

      More to come later……..

    • Anonymous
      November 17, 2011 at 1:39 pm

      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 🙂

    • Anonymous
      November 17, 2011 at 6:01 pm

      That sounds like a good idea. I will have to go back to mu Neurologist and get them to give me a copy of everything. I think I will do the same with my Orthopedic Surgeon also. It sounds like you and Kelly do the same thing with the binders. As for the insurance papers, are you talking about what the doctor gets or what my supplement insurance sends me? Which is not much.

      Okay for the report on my first day of IVIG,,,, It went very good. No side effects at all. They left the hep-lock in so getting ready tomorrow will be faster. I was very uncomfortable in the ER bed so my nurse called and got me a regular bed with controls so I could move my legs up and down. She told whoever she was talking to that she was going to keep it five days for me. I feel special now.

      As for my symptoms, my feet are still burning some but not like they were. Tonight will be the test but I am not getting my hopes up because I know that this was only the first day. My left leg is still hurting but I but that is due to the spinal stenosis. My hands are doing okay, they don’t feel as if they are swollen as much. I can close them easier.

      More to come tomorrow…………………

    • Anonymous
      November 17, 2011 at 6:19 pm

      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?


    • Anonymous
      November 17, 2011 at 6:30 pm

      Not sure about the dose today but the nurse did say something about 40grams. It was two big bottles. It took about four hours. I have four more days.

      I have EOBs all over the place. It will take me a week to get them all together. LOL

    • Anonymous
      November 17, 2011 at 8:42 pm

      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!

    • Anonymous
      November 17, 2011 at 9:03 pm

      Okay here goes. I think the brand is Grifols and there were two 20 gram bottles. I will look for the binder that you are talking about but will have to wait on getting one. Money is real tight right now. so many doctors appointments that it has taken me way down in funds.

    • Anonymous
      November 17, 2011 at 9:35 pm

      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.


    • Anonymous
      November 18, 2011 at 10:55 am

      Well here we are again. Same bat time and same bat channel. Another round of IVIG. Was doing good yesterday evening but around 8:30 my hands and feet started in like usual. I was asking my wife to call the F.D. to come and put my feet out. Did not get to sleep until 4:30 this morning.

      Kelly I did just that and hope to get the magazine soon. I looked the site over and shared my story with them. Looks like a great site to get information.

      As far as being a cheapskate my sister in law is the same way. You can call us that too because we have no money to spend, LOL.

      I have a question but a little shy about asking. Kinda personal. I do not want to offend anyone here. Someone can send me a PM if they want to so I do not have to post here.

    • Anonymous
      November 18, 2011 at 3:08 pm

      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.


    • Anonymous
      November 18, 2011 at 9:16 pm

      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 🙂

    • Anonymous
      November 18, 2011 at 9:40 pm

      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.


    • November 18, 2011 at 10:12 pm

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

    • Anonymous
      November 19, 2011 at 9:27 am

      Thanks all for the information on the binders. I got one at Wal-Mart last night for 0.97 cents. It will work for now until I can get a better one.

      Yes thanks yo Kelly for your wealth of knowledge and your time you make to answer all the posts. I hope to be as dedicated as you are.

      You are right Kelly it is a “Dude” question but here goes any way. Sorry in advance if this offends someone. I have asked my PCP about this and he has given me samples but to no avail. Okay now for the question. I know that CDP can effect the bladder so I am almost sure that it has an effect on “ED”. Am I right?

      This is getting kind of a touchy situation here at home. That adds to the depressed feelings that I get having to explain to my wife every time this subject comes up that it is not her it is me and I have no control right now. Will I ever?

      Okay got that over now for the update on the IVIG. today is the third day. the last two nights have been hell. My feet were burning and the feeling of electrical shock going up my legs were almost unbearable. My left hand was numb for most of the night last night. I was asking my wife to call the F.D. to come and put my feet out. How long is it going to take for the IVIG to work?

      One more question. I have been getting eye infections for the last several months. Is or can this be related to my CIDP?

    • November 19, 2011 at 8:43 pm

      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.


    • Anonymous
      November 20, 2011 at 10:34 am

      Thanks Tim for your reply. It is just that there ladies and I do not want to offend any of them. I was wondering if I will have CIDP for the rest of my life?

      Well it’s day four of the IGIV. Got a real close friend here and we are talking about collage football and having a blast.

    • Anonymous
      November 20, 2011 at 1:56 pm

      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.


    • Anonymous
      November 20, 2011 at 10:57 pm

      Thanks Kelly, Today has been a real good one. My youngest son and his wife got home today from Phoenix. They are here to stay. He was working for the Arizona Pipe Line Co. and they were really missing home. One because of what is going on with me and two they just wanted to be home. I am tired. We went to Oklahoma to the daughter in laws for a welcome home dinner. We left right after I was out of the infusion. Gonna watch a little TV and go to bed.

      The IVIG went good today and tomorrow is the last day. Not sure if I feel happy about it or sad. So far so good, no burning at all. Knock on wood.

    • Anonymous
      November 22, 2011 at 9:39 pm

      Man my left foot and leg is killing me. The burning has moved up to mid calf. Don’t know what to do. I really would like to sleep tonight without taking anything. I hate taking meds because i don’t want addicted to them.

    • Anonymous
      November 23, 2011 at 9:30 am

      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.



    • Anonymous
      September 29, 2010 at 5:42 pm

      I am a new member.. I was dx with MF in 1996. I had no reflexes and had numbness/paralysis in my feet, mid thigh, tips of fingers, shoulders and top of my head to my lower neck. I felt very lucky that is skipped my major organs. I appeared to have no problems after recovery. 14 years later almost to the day , I feel that I have problems that could possibly be complications. I have constant pain in my arms and legs (nerves feel like they are on fire) and I have sensitivity in the eye that had the worst numbness.
      I was wondering if this is normal or if others have this. Doctors tell me it is Fibromyalgia, I just don’t buy it.

    • Anonymous
      October 6, 2010 at 10:54 am

      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.


    • Anonymous
      July 5, 2010 at 11:12 pm

      Hi – I along with my mother and older sister have been caring for our “baby” sister since this past April from a diagnosis of CIDP. She developed this debilitating disease at 30 weeks pregnant with her one and only child. She spent 8 weeks in hospitals and delivered her son at 36 weeks gestation. Both of them were in ICU for 2 days post delivery. Kinda expecting his breathing issues, was not prepared for hers.

      Needless to say since her discharge from the hospital on May 12th she continues to require full time care. I take her to PT 3x a week, neurology appointments, and just recently, orthdotics consultation for her custom made AFOs. My mother continues to live with her and her son.

      We feel like we are living a bad dream. Just six months ago she was “normal” and now she is a 36year old women who can’t take care of herself.

      Both calves/feet and both hands/fingers drastically affected by this disease.

      She takes, neurotin 3x a day, high doses of prednisone daily, cymbalta 2 x a day and morphine 2x daily for pain management. She also gets IVIg monthly after her initial 5 day treatment in April.

      Whew…. just writing this is daunting. Our family has never faced such a challenge and on a positive note it has brought out all the love we truly have for each other, as my other sister and mother and I work together for her and her son (my other sister and I each have families of our own and full time jobs to juggle. My father is now living alone as my mother stays with my sister and her son).

      Honestly, every day I struggle to get out of bed, knowing I have to go relieve my mother so she can get some rest, in between my working and caring for my own family (thank God for a wonderful and supporting husband). I support my sister with all her ADL, and her struggle/fight to recover her functionality and independence.

      It has been 2 months of her recovery and we are praying for functional recovery within 6 months. She wants to work again (she teaches middle school art!!). We want to believe this can happen but honestly, there are daily doubts.

      Only through these forums have we found some commraderie, as this disease is mostly unheard of by everyone we meet, both medical professionals and our friends and families.

      Thanks for reading/listening…..


    • Anonymous
      July 6, 2010 at 1:41 am


      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

    • Anonymous
      July 6, 2010 at 2:44 pm

      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.

    • Anonymous
      July 6, 2010 at 10:35 pm

      thanks for the responses and advice. Sounds like we will be involved with her for some time. That is alright. Just want her to feel well, and as independent as she can get to.

      All of us agree that the caregivers need to stay well both mentally and physically for everyone’s sake. I know she appreciates all of us.

      Some things we have learned already is: don’t sweat the small stuff; everything takes longer, humor can be found in all situations, and generally speaking, communities are not handicap accessible even when they think they are…just having a closer parking spot doesn’t make everyday errands and getting around doable 🙂

      Let’s keep in touch. I know I enjoy reading these posts.

      (Northern Virginia)

    • Anonymous
      July 8, 2010 at 8:41 pm

      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?

    • Anonymous
      July 8, 2010 at 10:58 pm

      She developed symptoms during her pregnancy but at 30 weeks she needed to be hospitalized because she was falling, had severe headaches, and intense pain in her feet/calves that eventually spread to her arms/hands. Her OB thought it was pregnancy problems until she had a spinal and elevated proteins were found. When we think back she got the regular flu shot in October ’09 (8 weeks pregnant) and then got an ear infection. She continued to have respiratory problems all fall and into the winter (cold like symptoms). I really think it began from the flu shot and getting an infection right after that. From all my reading about GBS and CIDP I believe her body got confused from the live virus in the shot and then coincidentally getting the ear infection, her body started attacking her to protect the pregnancy. We always speculate because this disease makes no sense.

      She then spent 2 weeks being formally diagnosed at a different hospital with better neurologists available. She had the initial 5 day IVIG treament, then went to a rehab hospital until they took the baby at 36 weeks. She developed severe preclampsia and required immediate delivery then.

      She is improving. Her pain is 90% managed. She is getting physically stronger. Still wheel chair bound, but with our physical support we transfer her to couches, vehicles, bathroom facilities, etc.

      We are really praying that her AFOs are the magic bullet that gets her standing and using a walker in the next month.

      Not sure how to private message, but my personal e-mail is:

      Feel free to write me there.


    • Anonymous
      July 9, 2010 at 8:12 am

      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.


    • Anonymous
      July 19, 2010 at 10:34 pm

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

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


    • Anonymous
      August 8, 2010 at 9:22 am

      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.


    • Anonymous
      May 7, 2009 at 1:43 pm

      A Big Happy Mother’s Day To All You Good Mothers Out There !!! 🙂

      God Bless All,

    • Anonymous
      May 7, 2009 at 10:38 pm

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

    • May 8, 2009 at 3:59 am

      Thanks for that.. 😀

    • Anonymous
      May 8, 2009 at 10:30 am

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


    • Anonymous
      May 7, 2009 at 1:40 pm

      A Big Happy Mother’s Day To All You Good Mothers Out There !!!! 🙂

      God Bless All,

    • Anonymous
      May 7, 2009 at 7:36 pm

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


    • Anonymous
      June 28, 2008 at 11:55 am

      I am new this website, I have posted several thread already. I just wanted to thank everyone for being so warm to me. And also to thank everyone who has replied back to me and offered their help and lending their ears to my problems. Thank you. -Amy-

    • Anonymous
      June 28, 2008 at 12:38 pm

      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


    • Anonymous
      February 6, 2008 at 6:48 pm

      :confused: In 2004 I was diagnosed with GBS. I had IV transfusion,a lot of body pain, muscle weakness and fatigue. Paralyzed for 2 months. I’m still living to this year and I can walk now. but fatigue and tingling and weakness
      I still have. I keep fighting myself to get better but sometimes I lose hope I won’t be the same I used to be. If anybody out there can someone explain me if you know what I’m talking about. Is there full recovery and feel like you always felt before you had GBS.

    • Anonymous
      February 8, 2008 at 1:49 am

      [QUOTE=sonny]:confused: In 2004 I was diagnosed with GBS. I had IV transfusion,a lot of body pain, muscle weakness and fatigue. Paralyzed for 2 months. I’m still living to this year and I can walk now. but fatigue and tingling and weakness
      I still have. I keep fighting myself to get better but sometimes I lose hope I won’t be the same I used to be. If anybody out there can someone explain me if you know what I’m talking about. Is there full recovery and feel like you always felt before you had GBS.[/QUOTE]

      Hello,I think I’m in the wrong department sorry 😮

    • Anonymous
      March 31, 2008 at 9:13 pm

      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.

    • Anonymous
      June 14, 2008 at 7:18 pm

      I’m still 😡 sometimes and I know this is not going to help any. I just have to believe and receive and I thank you for your blessing J Moss11. I apalogized for not answering.


    • Anonymous
      November 28, 2007 at 1:12 am

      Hi, I am an occupational therapist student. One of my assignments in my neuroanatomy class is to interview an individual with Guillain-Barre Syndrome. I am unable to locate anybody or a family member to interview with Guillain-Barre. I was wondering if anyone on this discussion board is willinging to be interviewed by me. The interview would be done by email through this discussion board. Please let me know if you are interested.


    • Anonymous
      November 28, 2007 at 3:15 pm

      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

    • Anonymous
      November 28, 2007 at 9:43 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.

    • Anonymous
      November 29, 2007 at 12:35 am

      Thanks everyone for all the response. Just a little info about myself. I am a San Jose State University student in Northern California, currently in the occupational therapy program. If there is anything else anyone wants to know about me please let me know. Thank you again.

    • Anonymous
      November 29, 2007 at 1:44 pm

      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.
      GBS MFv 1993 and 2004

    • Anonymous
      November 29, 2007 at 8:33 pm

      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)

    • Anonymous
      November 30, 2007 at 9:10 am

      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.

    • Anonymous
      December 2, 2007 at 11:45 pm

      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.

    • Anonymous
      December 3, 2007 at 7:40 pm

      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


    • Anonymous
      June 26, 2007 at 5:24 am

      Just a quick overview as much of my story is the same as everyone elses. April 5th Miller Fisher Syndrome started. Was admitted to hospital April 7th. Diagnosed April 11th. Recieved treatment and was discharged April 20th. Been at home since but have just been back to Neurologist and he has signed me off until August 28th. He is really pleased with my progress and said I can return to work then. Every symptom has virtually gone now. The one thing that remians is a really bad back and leg pains. I cannot move for quite a while everyday. Also I am so tired by early evening every day. I can drive and virtually do everything I could before I was ill. I was expecting to be unwell for a lot longer and my recovery has been much quicker than I expected. I had no advice on what to do when I left hospital, I was just told I will get better. I did not lay down and take this, I have attacked this illness head on and tried to do as much as possible everyday. I have not rested like most other people and have tried to keep on the go as much as possible. I would just like to say that I am where I am today because of my wife, the Neurologist from Atkinson Morley, the nurses and doctors at East Surrey hospital and Tramadol. For a few days I was really scared but all the above pulled me through. Is there anyone from UK on here?

    • Anonymous
      June 26, 2007 at 1:48 pm

      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.

    • Anonymous
      June 26, 2007 at 5:01 pm

      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.

    • June 26, 2007 at 7:01 pm

      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 😮


    • Anonymous
      May 13, 2007 at 10:20 am

      Ok everyone, be good this week. I have to go stay with my son and help take care of his little boy. My son is having surgery,so he and his wife need me. Oh that’s right. You will get a week of peace and quiet from me. Just kidding everyone, I have really learned to consider you friends. It is so great to be feeling down and come to the forum and find your friends there and it lifts you up. I hope all of you will have a good week. Happy Mother’s Day to you dear mothers out there.:D

    • Anonymous
      May 13, 2007 at 10:23 am

      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.

    • Anonymous
      May 13, 2007 at 5:47 pm

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


    • Anonymous
      April 24, 2007 at 12:18 pm

      Hello all. I am very new to the forum and to GBS.

      I am a 38 yo male with a wife, a 3 yo girl, and a 6 week old boy. The first sign something was wrong was my hands going to sleep. It started in my right hand, then both feet, and then my left hand. The doc noted high blood pressure and fluid retention on a Friday and gave me a bp pill with diuretic. Sunday, I noticed I had trouble with stairs. On Monday, I could barely raise my arms and returned to the doc who wanted me to see a neurologist, Tuesday, 3/27. I could barely walk and went to the er. During the visit, I lost the ability to walk. After all the normal tests (CT, blood, mri’s, lumbar puncture, etc.) I was diagnosed with GBS and on Wednesday, started img. I got 5 treatments, and then was moved to rehab. I was discharged Friday, 4/20/07 and should begin outpatient therapy this week.

      I can walk with a walker but have many balance problems, and my hands and feet still feel asleep. I am so glad the therapist told me about this forum.

    • Anonymous
      April 24, 2007 at 2:23 pm

      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.

    • Anonymous
      April 24, 2007 at 2:46 pm


      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.

    • Anonymous
      April 24, 2007 at 3:48 pm

      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

    • Anonymous
      April 24, 2007 at 5:36 pm

      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!

    • Anonymous
      April 24, 2007 at 6:52 pm

      Welcome, we are glad that you found us.


    • Anonymous
      April 25, 2007 at 8:44 am

      Thank you. I alresdy have learned a lot and appreciate your support.

    • Anonymous
      April 25, 2007 at 10:09 am

      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

    • Anonymous
      April 25, 2007 at 10:50 am

      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.

    • Anonymous
      April 27, 2007 at 7:24 am

      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.:)

    • Anonymous
      April 27, 2007 at 7:38 am

      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.

    • Anonymous
      May 8, 2007 at 6:44 pm

      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.

    • Anonymous
      May 9, 2007 at 3:57 pm

      Thanks again for the welcome and tips. It does help to not go it alone. I had a setback during the week I was out of rehab amd brginning outpatient therapy, but I’m back on track. I am not a patient persion, but I’m learning.


    • Anonymous
      April 7, 2007 at 5:29 am

      Im new to this board and fairly new to the caregiving world. my father was diagnosed with cidp about two years ago. it has been a constant battle with more downs than ups. he right now is going through some heavy depression. he has been basically bed ridden through this whole process. as a family we are doing all we can and all we know how to do to try and keep him going. he is giving up on us.
      i know that when his meds are adjusted (they are weening him slowly off of prednisone) his moods are affected for a few weeks and then suddenly he snaps out of it. im hoping this recent bout of depression is mostly related to that factor.
      we are just about at a loss of what to do or say to help motivate him. he does not want to eat and refuses most of the time. refuses physical therapy, and basically refuses to get out of bed.
      im just hoping for a little insight from other famlies that have gone through this.
      thank you so much,

    • Anonymous
      April 7, 2007 at 8:10 pm

      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.


    • Anonymous
      April 13, 2007 at 2:40 pm

      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:)

    • Anonymous
      April 14, 2007 at 11:34 am

      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!

    • Anonymous
      August 6, 2007 at 10:12 pm

      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

    • Anonymous
      March 27, 2008 at 10:59 am

      [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.


      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)


    • Anonymous
      January 13, 2007 at 5:06 pm

      Hello Friends,

      It’s true I did not drop off the face of the earth!:p Jer has kept me informed of the important happenings. I was confident he would keep the forums going strong and under control. I have been swamped with family and foundation work this year. I’m not complaining, just explaining.

      I see TA is back! I was worried about you sweetie. Let me know how you all are doing, what’s going on?

      Hopefully life has settled down for me. I have had many family members and friends that have been sick and pass away this year, 13 in fact. Emotions have been all over the place for me but as we have all learned we have a lot to live for and I’m ready to get back in the swing of things again.

      I have with the help of Thelma Gifford and Bob Doehrman, started a yearly training meeting in Cleveland for the liaisons. We had 28 this past spring and are looking forward to about 35 this fall. The foundation moves forward in their commitment to educate and support the family’s and the medical professionals. If you have any suggestions to what we can do to help with the patients and caregivers please let me know.

      It’s great to see all you all again. I won’t be a stanger, just a little strange.:rolleyes:

    • Anonymous
      January 13, 2007 at 6:09 pm

      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.

    • Anonymous
      January 13, 2007 at 10:19 pm


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

      Best wishes,


    • Anonymous
      January 13, 2007 at 10:26 pm

      Hi Kass,

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