Welcome. You will find much support and help here at this forum. I am a mother who was diagnosed earlier this year with CIDP. I am lucky though because I started symptoms in November 2010 after my flu shot and got diagnosed by February 2011. So my body only had three months to do damage to my nerves. I have been on IVIG now since March and have seen quite an improvement in my symptoms. Hopefully your neurologist will start you on the IVIg infusions right away. For the people that have a good response it can be amazing so get your strenght and use of limbs back. I am still trying to grasp the fact that my life is no longer as it was before CIDP. I have limitations now that I did not have before. My daughter is only 7 so I am gratful that I am pretty much able to keep up with raising her. I need naps and I can’t do as much physically as I use to but mostly I do what I need to be her mommy. I work full time too. I need to get infusions every 21 days but I am currently not on any other medications. You are on the right path. You now have a diagnosis and can start to get the right treatment so that you can start to improve and get better. Good luck to you. 🙂

sorry to hear of your prednisone experience. I was put on 50 mg Which i was later told may have been too much : ( Anyway, went through a lot of what your talking about—hated it!!!.On my 4th dose i got extreme muscle weakness, continued at the high dose for 2 months–until at which point a family emergency happened and i literally thought i was going to die from the prednisone. called dr and started weaning off then. unfortunately it did not help me—fortunately i’ll have no reason to go on it again since it didnt work.
would love for you to share your cidp experiences–that’s how we learn….and thanks to the prednisone–just think you will be up all night looking for something to do!!!! Lori

please tell your son to at least read som of the post and stories here, then maybe one day he will feel comfortable enough to wright in. even if he does’nt for now,you can! we would love to hear from you…
god bless,
ms. judy

First of all welcome to the site you will find lots of people willing to discuss and will receive a great number of different opinion on any subject. It sound as if you are doing great. I went back to work 2.5 months after getting our of the hospital starting at two hours perday and moving to full time in about 6 months. However, I know I went back to soon. I could not handle full time employment and i am currently out of work on short term disability. i am 61 and do not know if I will return to work. No one including your doctor’s will be able to tell you when you are ready. I would suggest practice work where you do at home the same types of things you would do at work and see how it goes. I am now at about 13 months out of the hospital and still require two long rest periods to get through the day. But I know of others that have returned to full time with no problems. good luck and keep us posted.

Welcome to the forum, it is good that you are looking for answers for your mother. First, I think she has a very normal case of GBS, many people who get GBS go completely paralyzed within 48 hours. 30% also need help with breathing, just like your mother. I think what the doctor means by the brain, is that some of the “Cranial nerves” might be involved, that is why she cannot shut her eyes. This is not brain damage & should heal in time.

The 30-45 days he is referring to is what is called the “nadir”, or the point at which the patient reaches their lowest or worst condition. After that, the healing begins. It sounds like the doctors are very good and know a lot about GBS. She is getting the correct treatments, but this illness takes months to heal. I know it is very hard to see your mother in this condition, but she has an 85% chance of making a very good recovery. She & her family just need to be very patient.

PS For those of us on the forum, remember that to this poster English is a second language. Pick your word choices carefully, trying not to use the medical jargon so many of us here are used to using, big words, or idioms or cliches. He seems very concerned about his mother, but to me it sounds like a classic case of acute GBS, or AIDP. That is a good thing…

[QUOTE=brneyedgrl]Hello, i am new to this forum …. I would like 2 know what kind of results to expect from ivig?[/QUOTE]

Welcome to the forum. I’m sorry to see you here under such circumstances. Your story sounds much like my own. I was not diagnosed with CIDP during a hospitalization or any of the follow up neurologist visits. From the time I first experienced symptoms to the time I was diagnosed was about 2 years.

As far as what to expect from IVIG….that can really vary a lot. It depends on each person and what their specific case is like. It also depends how much, if any permanent damage has been done (like axon damage in addition to demyelination).

I had an upper extremity paralysis that I was about 5 months into when I was diagnosed and started on IVIG. It took about another 4-5 months for me to regain use of that extremity, but I did regain 99% of it. Still have varying degrees of sensory issues but can function much better.

Unfortunately, only time will tell, some people respond much quicker and more fully than I and others still have no change and go on to other treatments like plasma exchange, and/or steroids, immunosuppresants, which you may also already be on.

What is the dose and frequency of your IVIG treatments?
How old are you (if you care to share)?
Have you been on any steroids, etc?

Hope to see you post more!
jdunk

Erin,

I am glad that you found us, hopefully we can give you some support and answer some questions.

This board has been wonderful in helping me deal with my CIDP, yes it is overwhelming and confusing.

Take 1 day at a time.

The spinal tap had me scared to pieces! It isn’t all that bad…

This is one of the ways they can tell if you have CIDP, the protein levels in the spinal fluid are high.

I had the nerve biopsy done, it wasn’t fun but it really helped in my diagnosis to prove that there was de-mylatinon and re-myaltion of my nerves.

Anyhow it is very late and I could go on but I am very tired so I’ll leave it at that and when I am not so tired I’ll help you with more questions.

Not sure why you can’t have another baby, if that is really bothering you I’d ask your doc right away to help deal with the situation.

Rhonda from Canada

please read my thread “throat”. You are not alone several of us are having trouble with our throats!

I am also on gabapentin. Without it the pain is unbearable!

Rhonda from Canada

[QUOTE=jessicah]Thanks jdunk.[/QUOTE]

You’re welcome….that should make things much clearer!

Hello and welcome to the site. I am not a teen (more than 50 years old and a university professor at a medical school). I am three years into this process and I would like to encourage your daughter that it does get better. I had severe fatigue and lots of leg pain–that seemed to happen when I tried to be normal and ended up doing too much. For me, since I did not want to take any narcotics either, rest was the best help–getting completely still for about an hour in the late afternoon preferably with a nap–made a world of difference. The pain would go from severe to okay. I also had terrible neck pain. I saw a physiatrist (rehabilitation specialist) and he said that it was myofascial pain. It happened because of neck muscle weakness and not holding my head up well, but it made my neck hurt very badly and I had a severe headache for weeks on end. He did a trigger point injection and this and being careful how I help my head made a huge difference very promptly. I would like to say that now after the three years, fatigue is better and I do not have to take a daily afternoon nap anymore, but I still do better to lie down then. I have continued to work through all of this. It is hard to not be able to do what I used to do, but I continue to improve and just recently have passed a point of being able to walk normally about half the time. Healing is slow. It takes a lot of patience.

My suggestions for your daughter are to keep active, but to maybe think about keeping a journal for a while about what she does and see if there are any identifiable activities associated with the severe pain in the legs and elsewhere–I would guess it happens when she does a lot or pushes over “tolerance” as it is at this time. Lots of people including many physical therapist recommend lots of activity, but in GBS–one cannot do too much. You have to be gentle with your body as it heals or one will get lots of pain.

For me, Cymbalta has helped a lot with the pain. I also take naprosyn (Aleve). I take coenzyme Q10 and acetyl-L-carnitine at the direction of my neurologist and these seem to help. The nerve damage pain is not supposed to be relieved with Aleve, tylenol, or Advil, BUT it seems to help me with the severe achiness that seems more to have come from overactivity (for my current abilities as I went through this). Neurontin, Cymbalta, Lyrica, and other such medications will help nerve pain–but any one may not work in an individual–or stated differently–one may work in someone and not in another person.

Best of luck. WithHope for a cure of these diseases

Welcome to the forum. How long has it been since your son was diagnosed with GBS and what treatment did he get–IV IgG??
Some neurologists argue that there is not pain with GBS, but those here will tell you that there is. Often the pain is when one has “done too much”. It is really hard for a two year old to understand or be preventative in this–kids live life so enthusiastically. One thing that you might do is build in some rest or quiet times in the day (like story time or watching a video or a favorite TV show–or just cuddle time–that also works). For me, rest was by far the most important “pain modulator” and a hour of stillness or a nap made/makes a huge difference. I can now work all day, but have to take a rest period “horizontal” in the late afternoon or early evening. I used to have to rest every couple of hours and this may be the case for your two year old still.
Another thing that might help is for you to keep a little record of “good days” and “tough days” and what he did those days. This might help you to figure out what is tough for him and help find ways that “naturally” work to help. Sometimes physical therapy is a little ambitious for GBS in which case one has to advance slowly because nerves heal slowly. GBS is so rare that it is hard for people to know how fast to advance or to often realize that going to fast will hurt. For strokes or acute injuries–there is not as much overdoing pain and the limiting factor is what the body can do–for GBS–the limiting factor may be what the body can tolerate.
Third, believe him if he says he is having pain. You should not be afraid of helping him with ibuprofen or tylenol if he needs it–nor of asking for a prescription for tylenol with codeine for really bad times if ibuprofen or tylenol are not enough. Naprosyn might be another option for the bad times.
Lots of people think that you will not get pain in the face or mouth with GBS, but those of us on this site will tell you that many of us have had this. Again, I would believe your child if he says that his mouth or hands are tingling.
I do not say any of this to put down medical people (since I am one–working with children with cancer), but rather that this is a very rare disease and what is in textbooks is not very practical nor often “true to life”. Listen to your child and believe him–he knows best what he feels, he just may not at two years old know how to say it or compensate for it. You can help him by helping find contexts and patterns and by being his advocate.
WithHope for a cure of these diseases.

Kathy L

Welcome to our group. I also have CIDP and walk like a duck!

I was getting IVIG every three months until it was pointed out to me that IVIG only lasts for about 21 days before the effect starts to wear off.

With advise from others here I approached my doctor and now I get IVIG every month.
It seems to be working better!

I am not getting a ton of electrical zaps!

I still have pain and take Gabapentin for that.

As to how and why you got CIDP may remain a mystery.

Have you had any vaccinations just prior to getting ill?

Docs are pretty sure I got mine from a flu shot!

Just something to think about.

If you have questions just start asking away and the group will try to answer you and help you move forward.

Welcome again and take care

Rhonda from Canada

I just want to welcome you to Minnesota, the land of 10,000 lakes (actually there are over 14,000!) My brother lives in Lakeville, MN very close to the Mall of America. I live about 200 miles north of there. If my daughter’s family weren’t coming up this weekend, I would have gone down to see his family & attempted to meet you in person. But seeing my 3 year old grandson & 3 month old granddaughter at my home for the first time is just too exciting. I hope you have a wonderful time, the forecast is great for this weekend, at least it is up here.

Hello Lee Ann,

You were truly blessed to have received a diagnosis and treatment by knowledgeable health professionals. Though I know therapy was grueling, wasn’t it an awesome feeling every time you accomplished something? 🙂

I’m happy that everything has worked out well. As you said, it certainly is a life changer. After dealing with such a scary illness, I definitely learn to never take anything for granted.

Take care,

Tina

Welcome. I would like to echo what others have said. Each person is different in their needs for medications. Not everyone has the terrible pain that some get, but it can be really debilitating–even more than the terrible fatigue. The doses of medications have to be finessed. A lot of people do not take enough Neurontin to help the pain. You have to start slowly and build up. People can take as much as 3600 mg/day as Dawn says or even more. If you truly cannot tolerate this much, Lyrica is a cousin medicine and some people take Cymbalta instead. Immunoglobulin can make a big difference, but it is not instantaneous for most people (the children like Kevie) seem most likely to respond rapidly, but not all children do. there is no absolute dose or schedule of immunoglobulin. One needs what helps you to be better. The three doses to see benefit is in part due to the inflammation settling down and in part to building up with enough cumulative in your body. The importance of resting needs to be said again and again. Truly, try sitting with your feet up if possible as much as possible. I found that it was critical to lie down in the afternoon for an hour or so for a long time after this started. If I lay down, I could then resume activities after regathering up strength. It also made a world of difference to pain as well as to fatigue since they go hand in hand.
WithHope for a cure of these diseases

Welcome to this site. Dysautonomia is sometimes an atypical presentation of Guillain-Barre Syndrome and I think there is one person on this site that said he/she has primarily an autonomic presentation of GBS (???). Sometimes dysautonomia is felt to be an manifestation of another autoimmune disorder. I had never heard of pandysautonomia, but did know about Familial Dysautonomia–not exactly the same, but similar in what one does to treat it. Someone famous to the town where I live has a child with this. I googled “dysautonomia” and saw quite a lot of useful information as well. I think in America dysautonomia is used more than pandysautonomia. Sometimes “autonomic neuropathy” will give other information. I also used Google (you could use internet search engine of choice) to look up pandysautonomia and one get links with this as well that look useful. Some of the links are to the National Institute of Health (NIH, which is for the USA) which has a lot of good information based. See this one [url] http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm [url]. Try also the National Dysautonomia Research Foundation (http://ndrf.org). New York University Langone Hospital has a noted Dysautonomia Research center (see [url]http://pediatrics.med.nyu.edu/dysautonomia)[/url]. Familial Dysautonomia tends to occur in Jewish populations, so there is also a research center in Israel and the NDRF says where. I do not know if your son have any options to travel, but maybe it is worth looking at and thinking about travel once to New York University in New York state to see someone with expertise to help with this extremely rare disease.

Fludrocortisone and midodrine (and ephedrine) can help with the dizziness and low blood pressure effects. I saw reference that Cymbalta and other SSRI or SNRI can help also.

WithHope for a cure of these diseases

Welcome to both of you. You really have gotten some great advice about dealing with the physical and mental storm that your husband is in with this disease. I would like predominantly to emphasize the “getting better slowly” part and say that it is important, as others mention, to hang on, to note the slow progess that gets made, and to readjust approach to life. There are still a lot of things that your husband can do if you both help to be creative about breaking things into little steps and look to emphasize what is possible now. For example, instead of running around in the kitchen, it sometimes is easier to sit at the table and work on part of dinner. Reading and helping the kids with homework. Start a special “daddy time routine”–it will help him and them cope with the changes in life.

One of the best things I did was get a really comfy lounge chair so that I was out of bed and yet able to be comfortable in the den.

It is really, really hard to live with a lot of pain. If your husband has sickle cell disease, you both know this. A lot of the medicines mentioned can help. Cymbalta is good for the pain and tingling. Neurontin/gabapentin is a tried and true treatment for pain. You have to start this medicine slowly because it can make you really sleepy. A newer form of neurontin is Lyrica and a number of people tolerate it better. Elavil is an “antidepressant” but is really good for helping with pain management and also with helping people to sleep, so it works three ways. If you do not have an appointment with the neurologist for many weeks from now, either call that office or call one of your husband’s other doctors about helping to manage the pain and fatigue better.

There is a misconception that GBS is transient and that one gets it and recovers from it rapidly. As so many here will tell you, this is not typically so. Since it is so rare, it takes lots of people talking together like on this site to really see what the illness is like. A lot of neurologists say that fatigue does not happen and yet the experts that really see a lot of patients know that this is a very underappreciated aspect of GBS. To get past it, you have to be creative–do as much as one can sitting or reclining and do things in small steps.

Physical therapy can definitely help, but one has to have a therapist that appreciates the fatigue part of it.

To me, a shower was wonderful but exhausting. I would have to go lie down after a warm shower to recover. The reason to say this is to mention that even this “little” aspect of life was hard. It would have been easier with either a stool to sit on or one of those shower hoses. It is a “little” thing but important. You have to rethink how to do a lot of things in life. I think the most important thing is to try to be positive about this. I tried to approach it as “reprioritizing my life”–to not sweat changing in the small stuff so that I would have more energy and stamina to do what was really important to me.

Make sure that you and your husband stay “peopled” in your life with friends and people that care. Don’t be “too strong” to reach out.

I just want to re-iterate really, really to address the pain today. Your husband may be super stong, but this wears anyone down terribly.

WithHope for a cure of these diseases

Hey Soapy, I’m wondering if you remember me CODYSTANLEY, another member from the old forum still hanging around here.

GOOD TO SEE YOU AGAIN…WELCOME BACK FRIEND
Do you still have those pets???

Thanks for sharing your story.

I have quite a bit of pain all over but mostly pain and swelling in my legs, ankles, and feet. If you have pain at night. I have found a warm rice bag often helps.
Others have found applying a cool pack also works. All of us are different in what works to help relieve symptoms.

Rhonda from Canada

Glad to have you back, Caryl. At times, I have also taken a break from the forum, but recently it has been very interesting following Alice’s protocol. Back in 2002 when I underwent my cytoxan infusions, I was criticized by many here for undergoing such an extreme treatment. But these were people who got their monthly IVIG & led fairly normal lives. I sat day after day, month after month in a power wheelchair, with not even the use of my hands to keep me occupied; couldn’t even hold a book to read, nor could I turn a page. I posted over 1500 posts on the old forum using just one finger, with my hands all bouncy from steroid infusions I was getting back then.

Alice feels I would have gotten back to 100% had I had my cytoxan infusions earlier. But I was actually only 10 months into the beginning of my CIDP when I started them. She had CIDP much longer when she began this treatment. We all respond differently to this illness, I knew in my heart that once I lost the use of my feet & ankles, that it was permanent. Even when Dr. Peter Dyck from Mayo (named this illness CIDP & wrote the first book on it), told me I would be completely cured in a year’s time, I knew otherwise.

I wonder what you would be like today if you & your oncologist had tried cytoxan 10 years ago… a more healthy & normal life? Not having all of those IVIG infusions? Hindsight can be cruel, would this have been a good decision or a bad one? One just never knows what to do… I wish I had known the stock market tanked back in March, I wanted to buy a lot of steel stock & would have tripled my money by now (and sold the stock.) Like I said, hindsight is just that, hindsight.

Hello Jaymes,

Thank you for sharing your story and your experiences thus far. It’s certainly inspiring to read good news, especially as GBS and CIDP can have long reaching life changing issues.

Take care,

Tina

Welcome Missy, Andi (luv2Sail), Shie and Pam. I have a few comments to add to all of you as well as all the knowledge and support above. First, when I joined (I have been fighting this for 26 months), lots of people said that GBS means getting better slowly. So first of all, it is important to realize that nerves are really slow to heal, but as long as you continue to make progress, you are still healing. Books quote that “maximum recovery” will occur by 12-18 months, but lots of recent information shows that this is not true for everyone and that quite a number of people continue to heal for 3-6 years. The biggest gains are in the first year, but Dr Jacobs in his talk on GBS at the Dayton OH chapter meeting last year, said that recent information is that 20% of people still make significant improvement 2 1/2 to 6 1/2 years after diagnosis. You can search thread of Notes on talk of Dr Jacobs Dayton OH chapter meeting for what else he said about GBS.

For all of you, keep making baby steps. Andi, I am like you in that I have worked hard to make patterns to get through the day, but I have a tiny suggestion to mix it up a little since you feel like you are a bit in a rut. One of the hard things about all this is that it affects all the body and since lots of activities require lots of coordinated/cooperative effort, arms and legs have to work separately as well as together.

My second comment is likely not necessary, but for those new to all this, when people say you are doing great, it usually is a strong voice of encouragement not saying that the race is won. Each one of us has differences in GBS/CIDP–in how it comes on, what it affects, what helps recovery, time course to recovery, how much goes away and how much continues to bug us. It is a very variable “syndrome”. Also lots of people have other health challenges or sensitivities to medicines. for example, people with liver problems do have to be careful about tylenol and people with kidney problems have to be careful about Celebrex or other non-steroidals.

My third point is that I do think that GBS is the Boogey man–this stuff is scarey–its affect on life and its unpredictability. I think there are worse things out there and so this is not a horrible monster, but it is a humongous challenge to life.

Okay, four. It seems really, really important to be able to get good rest/sleep and it is essential to have pain addressed. For me, lying down (flat) in the late afternoon for an hour or so helps pain in the feet more than any medicine. Other people have also commented on this. It is sometimes hard to do, but is worth trying as well as trying the number of possible medications that can help. It is really important for pain to be controlled enough to live life and to be able to rest. Neurontin is a good medicine, but the best way to have it work is to increase the dose slowly. Lyrica does not seem to work for everyone, but also sometimes people do not get enough. It is also important to increase this medicine up. I can take pain, but I cannot take fussy brain, so I try hard to use activity modification, getting my feet up, and have tried acetyl-L-carnitine, etc to help the fatigue.

Five. many of us seem to be like Andi in that what we do causes pain hours after the fact. I feel when I have done too much in a day that night, two days later, and less often the day after doing something. Usually the night after doing too much–there is a lot of pain and trouble being able to sleep. The two days later part is an achey and tiredness like having tried to run a marathon without anywhere enough conditioning. I started wearing a pedometer to help keep track of the number of steps I take in a day so that I could “slow” down when doing too much and also know a little better what is “tolerable”.

Question for Pam–if I understand correctly, you say lots of family members have something similar? Is there a hereditary neuropathy?

WithHope for a cure of these diseases.

Welcome to this group. I have a few comments. First, it is REALLY surprising and dangerous that he was sent home with the instructions just to call if there were breathing problems. That might happen if there were several weeks of slow symptoms before that time, but it is generally considered a medical emergency and definite need for immediate hospitalization when someone has only a few days of symptoms that are still progressing. This is because people can deteriorate very fast with GBS and also because there can be autonomic instability (changes in heart rate and blood pressure) that are life-threatening as well as the fact that the respiratory “failure” is due to weakness in the muscles of respiration so that people do not breath well enough. If you do not breath well enough, you cannot compensate when you start to fail and inadequate breathing (ventilation) can lead to build up of carbon dioxide even faster than drop in oxygen. Carbon diaoxide build-up makes people sleepy-so people can die at home of respiratory failure if there is not monitoring of the ability to breathe.
It is also a bit shocking that your father got a trach this fast and was transferred to a skilled nursiing home this fast. Again this sounds more like decisions being made for hospital/HMO/financial reasons rather than the best interest of your dad. There is a lot of unknowns about this disease including appreciation of the medical changes that can occur with it and the need for close monitoring and medical intervention in order to help minimize long term sequelae. A lot of people think that there is always full recovery and that you do not need to treat with IV IgG or plasmapheresis. The doctors that are most expert in this, advocate for intervention. Two of the “much needed areas of further research in GBS” are wheither it makes a difference to give IV IgG in “mild” GBS and whether to give a second dose of IV IgG. There are actual clinical trials ongoing for the latter. When someone is intubated and cannot move from the neck down, there is no question that this is “mild” GBS and this person should get IV IgG. At the symposium, the consensus was that if people remain on a ventilator or with significant weakness/paralysis, they should get a second dose of IV IgG. It is hard to regain use of breathing muscles after a long time on a ventilator, so it is better to be “aggressive” to try to get people back to breathing on their own and moving on their own as much as possible. I very strongly would suggest pushing for another immunoglobulin treatment. It might not make as much difference now as it would have in December, but it could still make a difference expecially since there was “backsteps” in recovery.
Regarding what the something was that lead to a reversal of progress, this might be many things–that the first dose of immunoglobulin “wore” off or that your Dad had a virus/immunization that caused a “flare” in the immune reactivity. Normally the antibodies in GBS get high at the beginning and then whatever was the trigger for the autoimmune reaction is gone, steadily decrease. Sometimes, there can be a second boost in the production of antibodies and sometimes the underlying disease is really CIDP and not GBS at all–just a very severe onset.
WithHope

Welcome to this site and thanks for asking your questions. Unfortunately, it is really hard to say how long symptoms will last because each person is different in healing and in severity and range of symptoms. A lot of neurology textbooks tend to say something like that you will have most, if not all of your healing from GBS within 18 months after onset. Real life is that there are a lot of people still making progress and getting better 2-5 years after it, so that this is what the more informed doctors are saying. We tell each other that GBS stands for Getting Better Slowly. Reality is that time will not be exactly the same for any of us again. I have learned lots and lots about patience and perserverance and living in this moment from this illness. I did not ever think I NEEDED to learn this, but I guess I did. The best estimate for “recovery” is the slope of your own curve. If you are still slowly noting recovery steps happening, then you have not plateau’ed and can expect approximately the same progress in the same amount of time as previous. Regarding not being able to smile, there are some people that do not recover some things that previously they could do. I do not say this to be discouraging, but to say that it is worth it NOW to start working on showing a “smile” in other ways–with words or voice or gestures. There are many other ways to convey “happy to see you” to others including just saying it. Please know that we all here wishing you on on your journey.
WithHope for a cure of these diseases.

It is always wonderful to hear sucess stories and that people are living normal lives after GBS. As Dawn said, there is a lot of concern to be really safe for mother and child to be pregnant after GBS and so this is also very positive.

I have a question. What do you mean about electric shocks throughout your body? Was this part of your treatment?

I have a suggestion. Would you rewite what you said in Spanish? There are a lot of people in the US more comfortable with Spanish than English and there is little information or success stories available to give to them. It does not always seem the same going through a translator. I ask this because I was helping a family today that really, really wished they could talk to someone in their own language about a rare illness. Their language is not Spanish and illness not GBS, but it is still that person to person contact that makes such a difference. If you wrote your story in Spanish, then liasons could give it to Spanish speaking individuals as a lantern of hope that people that are paralyzed can get better and live normal lives after this illness.
WithHope for a cure of these diseases.

Welcome to this site. There are several people on this forum that got GBS associated with surgery. Last month I went to a GBS/CIDP regional meeting in Dayton to hear a neurologist speak and he said that surgery cuts into and causes exposure of parts that normally would be sealed (for example, cutting through nerves allows myelin to be released into the body so that the body can react to this normal protein that is normally sheltered away from exposure). That made sense to me, although your reaction–waking up with inability to walk is really a fast immune reaction. I have also heard that the stress and worry before surgery may set us up for an immune flare.
I hope you continue to get stronger.
WithHope for a cure of these diseases

Chen, I apologize that I can’t answer any of your questions (I’m being treated with Plasma Exchange alone).

But welcome to the family. I am glad you decided to jump into the water with us.

Gary

Hi Jeff,
Welcome out of lurkerville! I just left myself.

I’m really glad you are decoding your health imbalances and on the road to healing. It really helps to have a great Dr. Unfortunately we sometimes don’t know great until we have lower standards to compare to.

I hope your treatment helps to get to a level of functioning stonger and better than yesterday and today.

It’s good to have this site as a resource to help us understand healing, or not from others who have been walking the path longer than us.

Have a great day,
Erin

Hello Carol, welcome to the site. I had my GBS almost a year ago. Im 54 and my feet are the last to heal.An old timer here always said GBS means “getting better slowly”.My stamina returned before I started seeing improvement.I was hit up to my neck with a little on my head at the top right side.If you are still proggresively getting worse, I would push for IVIG treatment.My feet ,legs ,arms ,hands and buttocks would buzz ,with pain ,with any movement. You are fortunate to be able to work,but you must take into account how much that work is hurting your proggress.
Take care
Ron
Ps I got the ivig treatment with in a few days of symptoms, didnt walk for 2 to 3 months afterwards.It was helpfull for me to write a journal of milestones to see that I was getting better. In my mind ,it seemed to slow for quick healing . I thought I already had lots of patients, but learned some more!

Hi, Barry. Welcome to the forum and this on-line family of sorts. Sorry that you have needed to join us, but we are glad to help now that you have. I will try to give my two cents on your questions.
First, pain. Neuropathic pain is tough to deal with. You potentially can increase the Lyrica (slowly so as not to make you too sleepy). Others say they get better effects with the old tried and true neurontin (gabapentin) but many say that it has more side effects especially sedation. Cymbalta helps some of us. Since you respond favorably to coolness, use this when you can.
Regarding IV IgG. Dawn is always right on about advice with this. Most people get a loading dose of 2 g/kg and then various neurologist try much less or somewhat less as loading. The important point is to get enough into you to see a prolonged effect. Sometimes this does not happen after the first dose or two. It seems important to be dosed relatively frequently–at least every 4 weeks although some people need redosing every two to three weeks to keep the level of immunoglobulin high in the body. I work with children with immune deficiencies and we often give immunoglobulin pretty rapidly for replacement or due to autoimmune blood problems. However, this group of people cannot take it fast. I think this is because the immunoglobulin is binding and substituting for other bad immunoglobulin on nerves and this interplay annoys the nerves. At least that it what it felt like to me. The maximum rate I could take infusion was 150 ml/hr. We have 4 -5 year olds going faster than that–but if I went faster, I felt like an horse was trying to sit on me. I got my infusions of immunoglobulin at my work I got to pretend to be a child–ha!) and worked most of the time through them. I did get headaches–the aseptic meningitis and this bothered working as did taking benadryl to help prevent this reaction–but if I fell asleep, people just laughed at me and life went on. If you get infusion at night and are going to sleep anyway, take benadryl. Otherwise, take tylenol and/or Aleve to prevent headaches. Only about 10% of people are supposed to get the significant headaches with immunoglobulin–again the frequency on this site seems a lot more. I have seen a number of significant transfusion reaction to immunoglobulin and personally, I do not think that it is really safe to do at least the first infusion at home. One in 700 people are IgA deficient. One in 20,000 people anaphylax to immunoglobulin meaning they have a life-threatening allergic reaction to the immunoglobulin and typically it is because of IgA cross-“contamination” or co-purification in the product. There is thus a non-trivial chance of having a really bad reaction and even dying and the chances of this happening are greatest on the first or second infusion. For some people, those numbers are not too bad, but for me, I would not chance it. Many of our kids get IgA levels checked before the first infusion so that one knows a little bit if the risk is greater or less. Personally, I think it is worth going to an infusion area for the first times–take a bunch of your paperwork and a cell phone and work away.

Classically, cognitive impairment is not supposed to be part of this set of illnesses as it is supposed to be damaging only the peripheral nervous system. That being said, many of us have trouble with thinking at times. This MIGHT be due to the fact that there is direct effect on the brain as some research argues that the effect is really not isolated to the peripheral nervous system. It also may be due to the fact that pain is tiring and having your life suddenly and irreversibly altered is tiring and stressful and saddening. It could alternatively or also be due to the medication used to try to help us live life. I also have continued to work in a pretty intense position–not like you, but one with its share of challenges. I have had to modify what I do and find ways to minimize physical effort. My guess is that you will also. However, your go-to attitude will take you far.

WithHope for a cure of these diseases
GBS 3/07–maybe CIDP, maybe not……

Hi! Welcome to the forum. I was diag. with GBS in 4/07 & in 2/08 diag. with acute sensory neuronopathy. I am not in Flordia but some areas do have local support groups. I would suggest that your father come to this web site. There are many, many people here that can help your father with his depression by just being able to vent 🙂
I have actively been on the site since July. But it does make a difference when you are able to read others posts & realize there are many others who are facing the same things you are. The friends I have met here are very supportive & encouraging.
As for the disease & how long it takes for recovery is the unknown, thats the bummer.:confused:
You will also find many different treatment plans, I take IVIg every 3 weeks & it helps.
Is your father on Medication for depression/anxiety?
How old is your father?
I am 53.
Your father could benifit from this forum & the information GBS/CIDP provides invaluable information.
Talk to your father & encourage him to come to our GBS family:)

If you have any other questions just let me know.
Good Luck & God Bless

Welcome, Roma. Jean & especially Wayan.
I have GBS, diag, 4/2007. When I found this forum & all the wonderfful supportive people it has made a big difference in my life & recovery. GBS is a serious illness that effects us all a little different & recovery is at different time frames.
What questioins you have can be answered by someone. What one person doesn’t know someone else will. That is what is so great about this support group we call family. 🙂
Remember like Janet said GBS stands for “Get Better Slowly” :p
Welcome and I am looking forward to reading your posts 🙂

Sara,
Welcome!:) I have learned so much from others on this forum. I saw where you are 52. I am 53 & was 52 when diag. with GBS last April. This illness really sucks at times but there is so much support here it is wonderful.
Again, welcome and ask anything you need to know & there is always someone out there with the answer.
Good Luck Sara!

i would like to add my welcome to those of others as well as a hope that all went well with the testing today. I also wanted to say that not all people with GBS or CIDP have an elevated protein in the CSF fluid, but it is an important test to do, because 90% of GBSers do and because it is important to make sure that there is not evidence of MS.
I would also like to say that in you description, it sounds like your hands might not be affected??? as you said you are numb on the bottom of one arm from wrist to elbow and on the other arm from elbow to shoulder. As well only the backs of the legs are numb??? GBS/CIDP is often stocking and glove in distribution because it depends on the length of the nerves not their origin. (In other words, the whole foot is numb like wearing a numbing sock or the whole hand like numbing gloves are being worn). When there are patchy changes, this makes one think the problem might be with individual nerves–the lowest ones from the lumbar spine (L4 and L5) are associated with numbness on the top of the foot and front of the lower leg (shin) and the upper Sacral (S1 and S2) are associated with numbness to the back and bottom of the foot and the back of the calf, respectively. There are also different nerve roots of the cervical and thoracic spine that are associated with numbness of the arms with the higher ones down the front of the arm and the lower ones up the back of the arm. MMN is one of the problems that deals more with multiple individual nerve roots and so is a little different than GBS/CIDP. As many people say, there are many variations and overlaps, but if your hands are not numb or not the front of your legs, it is important to make sure that your neurologist knows this.
WithHope for a cure of these diseases.

Welcome! Great family here with wonderful input. Glad to see you have joined but sad that you are added to our list of being sick. I hope you recover soon and wish you well.

Welcome to both of you. Hugs from all of us here.
I agree very much with Lee about your doctor and the fact that he is being honest with you. CIDP is a quite rare disease with lots of variability between patients. It is often a diagnosis of exclusion. I have had huge frustration with the fact that my doctor still has not really said with any confidence whatsoever what I have. I am like your wife with lots of negative tests and a number of symptoms supportive of GBS/CIDP. It is hard to know and plan life without knowing what the diagnosis is, but on the other hand, I think his list of possibilities includes some nasty stuff that I might as soon not want to know if I had it. 😉 I got better with large doses of IV IgG. I got better with rest. He also wanted me to get a second opinion, which I did three weeks ago. I am waiting to hear about that.
My suggestions to the both of you are to utilize this website for education and to get the information mailed out by the GBS/CIDP foundation, to try to rest as much as possible and be patient (these are not fast resolving diseases), support each other and talk about what it is like and what might help, and finally, don’t be afraid to push for treatment if it is going to take a long time before she can be seen for a second opinion–especially if there are major steps downward. Even though it would not seem so, there is a point where I found myself unable to cope. It was not because there was a big difference as things slid slowly downhill, but it was a straw that broke the camels back type situation–where finally, it was too much to keep going.
In retrospect, it may not have been a bad thing because it forced me to complain and my neurologist to define what he needed to have happen before he might feel less uncertain with the diagnosis–so action got made.
Anyway, both of you keep up hope.
WithHope for cure of these diseases

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

Hi Julie

There are a few of us from downunder here – Kazza, Kiwichick, me (and I am sure there are a few others) – as long as you are happy to talk to us Kiwis!!!! 😉

This forum is outstanding in terms of the support and advice you will find. The thing is, each person is different – BUT there are striking similarities in terms of the emotional and physical issues that we all deal with on an ongoing basis. I hope that you will take advantage of all the weight of wisdom that exists here!

Take care and welcome !!

Debs

I also have CIDP, came down with quite a severe case back in the spring of 2002. I remember having no idea where any of my limbs were when my eyes were closed; of course, at that time I had lost sensory feeling below the neck as well. As the feeling came back, so did the proprioception issues. But I still suffer from muscle cramps & spasms, seeming to be the worst in my thighs. My hands also lock up on me still, I think they call it “trigger finger?” Funny, how rarely I even think of these things anymore, as times goes on, one tends to adjust to the “new me,” as I have come to call it. You mean everyone doesn’t have their thighs bouncing around like crazy when they go to bed at night? I do find a tsp. of mustard does help when it gets too bad, & then there’s always, rest, rest, & more rest…
Pam

Welcome Elizabeth and father to this family of people who are living with Guillain Barre or its longer cousin CIDP. It is great that you are so supportive of your Dad. Keep reminding him how much he has done for others and how special he is to all of you. As he gains strength back, let him do what he can, but save the tough things for “sharing” so that he keeps gaining strength. I also think that the worse things of all this was the fear of being alone and having the life I have lived change so drastically overnight. It is almost expected to get a little depressed in mourning for the life that is so changed. Your family is helping him a lot to be with him.

WithHope for cure of these diseases
GBS 3/07

Jayant

Welcome.

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

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

Glad to know that you are doing better. I had the steroids when I first got GBS and they hindered my recovery and did not help me just made it worse. The doctors did so many tests thaqt were unnessessary because they didn’t talk to the neurologists. I had a nerve biopsy even that showed inconclusive and it was not needed. I wish that more doctors would know that steroids are the last thing they should give. Communication is key and there needs to be more education. I deal with my GBS still and am currently still in hospital and they can’t figure out whether it is GBS residuals or something else. I am just one big medical mystery. Hope you all the best.

Sonja

welcome to the family…………just go on reading the individual stories and get the info that helps u a little………….

Sridhara Reddy.Ch

Suzon, You’ll soon find you have discovered a new family here. So many wonderful people with so much to share.
My suggestion to you is to be sure and share everything that is going on with you with your family. Since many of us ‘look fine’ people assume everything is great. I think it takes a lot out of a person to carry on as if all is well when you are really fatigued and maybe experiencing discomfort.
Take care, and stay in touch. Lot’s of information here.
JayDee

Welcome to the GBS family.

I had GBS in 1995. I have now been diagnosed with CIDP. I have 3 to 4 episodes every year. Some are mild and some are severe and last for a couple of months.

I would say listen to your body. When your tired and stressed, try to slow down and rest your body when you can.

I have learned that stress plays a big factor in my CIDP.

Greg

Welcome to the forum, Smiley. You have got some good advice – all the above. I had a very similar experience to yours, but with a few twists and turns, as you can see we all do. Just follow the above advice. Go Slowly. Pace yourself. Listen to your body. You can only go as fast as your body heals! Pushing yourself causes pain and damage. When I came home from the hospital in 1993 my hubby called me smiley all the time – because that is something I could no longer do. Is your face frozen too? I am 3 1/2 years post gbs, now and still struggle, but the majority of those afflicted make amazing recovery’s, according to the text books. I have never actually met a person with GBS in person. Good luck.Stay in touch.;)

Alma
GBS-MFv-1993 and 2004

Welcome to the forum! The folks here are so warm, friendly and knowledgeable. I am new also, dx’d with gbs on 12-12, no treatment as of yet. Congratulations on your progress. I hope it only gets better.

You live in a beautiful part of the country. I was in TN for the first time last July. I’m in the salt grass prairie of coastal Texas so those hills in TN sure looked good to this flat-lander!

Carla

Deem, As one newbie to another, welcome. I’m finding this is a great resource of people and advice, to those of us just beginning this journey.
I have learned so far, this is a really individualized disease. Everyone has basically the same symptoms, but, the extent and course of things are so different. I’m one who has been going the prednisone route. (my doctor also has me on a low dose of senemet for muscle spasms.) Many people can’t stand it (with very good reasons), but, for me it has been my only option. Yes, the weight gain has been very bad, and I’m working to counteract that. (Warm pool exercise doesn’t seem to take too much out of me.) My doctor tried a group of other things and medications that nearly put me in my grave! (one medication even caused me to periodically pass out, wherever I was.:eek:) And I know that the medication will never be a treatment, just hopefully, buy me some time. (I think we all wish for a few more of our “good days”) I hope you find your way through this, and can manage your problems too. – Busymom

Hello and welcome Lalacox. You can find a wealth of information and support here on this forum and get an extremely helpful packet of GBS information from the society if requested.

One of the things about GBS that sometimes is unappreciated because it is so rare that doctors typically see only a small number of cases is that it varies a LOT from one person to another–in severity, in distribution and manifestations, and in how it impacts their life. Part of this is that the degree of activation of the immune system against the nerve components (intensity of the assault) is different and probably the target varies as well. Some people have involvement mainly of motor nerves and so are weak, others have problems with sensory nerves (can have pain and tingling) and still others autonomic nerves (and have problems with blood pressure, intestinal or urinary function, etc). Most people have some combination.

I also had a “mild case” meaning that I had to walk with assistance, but could still walk and breath on my own. In asking this question many times because it bothers me so much, I find that most people with GBS have fluctuations in their symptoms based on what they do. There is neuromuscular inefficiency meaning that the muscles and nerves do not talk to each other well like they used to do. Perhaps only part of the muscle is getting the signals to act when the others act and so the parts actually work against each other (because the nerve signal to contract gets to the different parts at different times and probably different strengths than the body has learned and used before). If you “overdo” any muscle by working until it is tired, the amount of fatigue or weakness is way out of proportion to what you would have previously experienced. I told my doctors that it was like climbing a steep mountain to walk when it should feel (because it is) a flat path. It may be that when one side gets weak, you overuse the other side (because you want to keep living your life) and then that side gets weak and takes time to recover. Watch for this and if so, cut down on what you do on both sides so you do not ping pong. Yes it will be terribly flustrating, but rest seems to help healing a lot.

FYI also, a spinal tap often is negative in the first week of Guillain Barre, sometimes up to 10 days into symptoms (because it takes time for the inflammation to lead to shedding of proteins and this is good thing). I have read that up to 10% of people with GBS do not have an elevation in the CSF protein. I have had two spinal taps and neither had an elevated protein.

Classically, Guillain Barre is supposed to be symmetric, but this is also not the case as well, but the weakness is usually relatively consistent from one day to another. i would guess that that bothers your doctors, but it may be as above from trying to keep going. Instead of recovering in a few hours, it takes overused muscles of GBS patients sometimes days and sometimes even longer to recover. Like with running, the worse of the fatigue after muscle use can also be two days later. You have to relearn how to live based not only on how you feel today, but also how you expect you might feel in days. In my high intensity job, I have found again and again, if I overdo today, I will pay for it for days and days.

Stay strong in spirit and develop lots of patience with the change in your life and the difficulties it is for others to understand what it is like. Ask lots of questions here, people are kind and helpful and have lived with this problem and so practical!!!.

WithHope for cure of these diseases.

I just wanted to welcome you to the forum! I was also wondering where in WS you live, as we are neighbors since I live in northern MN. I spent almost 2 1/2 years in a wheelchair after getting CIDP & didn’t go to a grocery store for 3 years. How small our worlds can be at times; how much “healthy people” take for granted. I will post more after a good night’s rest…
Pam

Hi Jam,

Welcome to the Forum and I hope you have time to go through some of the posts here as they will be very helpful in answering questions that you may have. First off, it sounds like a very classic case of GBS an it progressed quickly as it does sometimes, but the good thing is that they recognized it quickly and not days or weeks later. Like Ali said too, if he is moving his other eye, that is a big step forward! It is a slow process of recovery, and very frustrating for your dad. As far as others his age, I know I have read many other cases with his age, as age is not really a factor at onset. His physical health can help in in recovery though in my opinion. Good luck to you! Gabe

It is always nice to see someone from MN on the forum; so I would like to sincerely welcome you. I know what it is like to be in a wheelchair for that long, for me it was only through a miracle that I was able to walk again. I know what you mean by independence, I lost that for so long also. You will find so many wonderful people on this forum, I have friends that I still email or talk to after 5 years. I hope you will become a regular.
Blessings, Pam
BTW I also sent you an email, I hope you got it.

Hi Charliegirl. Welcome to the forum. The members are really supportive here. I also have CIDP — the onset was different, mine was very slow and showed a relapsing/remitting course. I’m getting IVIG once every 6 weeks now for the past year and it’s still working. But I’ve read other peoples’ posts that say it stopped working for them, so I guess it’s not unusual (although it’s my biggest worry!). I also have burning/tingling and numbness in my feet, but it’s bearable. I pretty much only wear Keds these days, even at work (if they don’t like my footwear, too bad!). Hearing about your teeth is interesting to me. I’ve always had sensitive teeth and have been using Sensodyne regularly for a while now, but a few weeks ago I had a routine exam/cleaning and one of the nerves flaired up — got even worse after my IVIG last Thurs. Usually these flares will calm down pretty quickly, but this one is bad and I couldn’t help but wonder if the intensity/duration is CIDP-related. Guess there’s no way to tell for sure. Incidentally, my biopsy surgery sites also get more sensitive after IVIG — I guess healing nerves work both ways.

I hope the more frequent IVIGs help your weakness — I know how bad it can be (that was my main symptom). Or that your new doc has some ideas on how to effectively treat you so that you get stronger soon.

Wishing you the best,
Caryn 🙂

I would first off like to welcome you to this forum. The people here are great & all together have a wealth of information about GBS. First off, your husband needs to get his pain under control; it also sounds like he might need a new neurologist, one who is more understanding? He should probably be on a higher dose of neurontin than he is (at least 3600 mg a day or more), or try Lyrica for nerve pain. He should also be on something like Vicadin (Lortab) for his other pain. The idea here is so that he can get more rest, as that is when the body does most of its healing.

Having said that, I can’t begin to stress how important it is to rest, as he probably still has major fatigue. This is just part of the illness, probably caused by his body having to work so hard to do anything at all (using damaged nerves.) He is still early in his recovery, remember that the first two-three years are the most important for recovery & rehab. Remember that 80%of GBS patients make almost a full recovery. Keep us up-to-date & post often.
Pam

First off, I want to welcome you to our forum. It is nice to hear from someone who is dealing so well & doing so well with this illness. You are one of the lucky ones, many of us here are not quite as lucky. Or maybe you are more the norm, & many of us here are not?
I can only wish that I had responded to treatments as you have, even though I had PP within a day of being dx, & 4 more the next week. Still I deteriorated to a quad state in four weeks time. Even IVIG biweekly did not bring me around, solumedrol infusions did no more than keep me out of the nursing home. It is good to hear from someone who responded so well to the standard treatments…

Hi Linda

I’m very new in the forum too, but for me it has been very useful. I don’t feel alone anymore with my CIDP and here you can find very good friend that understand you perfectly and we all can share ours experiences. So write and ask as much as you need, certainly someone will have an answer for you.

Welcome and best wishes.

Lourdes

Hi Rachel. Welcome.
It seems the symptom pattern is different for everyone with CIDP. I had relapsing and remitting weakness for over a year before I finally got diagnosed and treated. Sometimes the weakness wasn’t too bad; other times it was devastating. The remissions were to different degrees, too — sometimes total, sometimes just a little better. Hang in there. It’s good you now have a neurologist who is taking this seriously (as they should!) and will recommend treatment. As to the pains, I have what I call “random shooting pains” — intense pain but brief. They are mostly in my feet but also can be in my hands, neck, etc. So far I have not gotten any medication for the pain, but others here have more frequent or constant pain and take a variety of meds. I have been getting IVIG treatment since last July and it has been great — I could hardly walk or hold anything at the time I went in hospital and felt almost immediate improvement. Others have had different experiences — again, we’re all different. I hope things improve for you quickly! 🙂

Caryn

welcome to the family……….pls do post ur story…………were every one can learn some thing from ur story………………defenitely every one’s story has one or other subject to learn. seeeeeeeeeeee uuuuuuuuuuuuuuuuuuuu.:)

Hello Robb,
Welcome to your new family where we feel what you feel. When you are ready to come back, may I suggest that you put your post in GBS/ADULT, many of our family members will miss your post when it is placed in News and Announcements. Speaking for myself, we do not frequent N&A on a daily basis, as you can see by the date of your post and mine.

WAIT UNTIL YOU SEE THE WELCOME YOU GET IN GBS/ADULT;) With your new family, you can vent, cry out of frustration, find support, ask quuestions. We’re here and waiting.

Hi Loudres,
Just to say welcome, feel at home and ask as many questions as you
can. Everyone here is nice and helpful and you’ll learn a lot from the posts.

Lourdes,
I’m sorry for your situation but glad you found this forum. The people here are very supportive and have lots of good information.

I’ve had CIDP for more than 2 years now, but was only diagnosed last July. At first the weakness was manageable, but by the time I was finally treated, I was so weak I was almost disabled — could barely walk, function, bathe, etc. Like you, the IVIG worked great for me. After the first treatment (3 doses in hospital), my doctor prescribed 1 infusion every 4 weeks. Since symptoms didn’t return, I went to every 5 weeks. Now, I’m trying 6 weeks. Today is 5 weeks and I’m OK but starting to feel slight symptoms, so I’ll see how the next week goes. If I get too weak, I’ll go back to 5 week interval.

It sounds like you’re not getting the IVIG often enough if you’re getting really weak inbetween. Maybe your doctor would be willing to schedule you for regular treatments, closer together, then see if you can go longer between doses.

Even with the IVIG, I still get tired easily and can’t do as much as I did before. It’s not easy. I doubt I’ll ever be able to stop getting the IVIG, but, like you said, it’s worth it to be able to be almost “perfect” again.

Good luck with your treatment and stay strong!

Caryn

welcome caren

I just want to welcome you to the forum & we hope to hear a lot from you. I am glad to hear that you are getting rituxan, as it has helped some of our members here with CIDP. But I was surprised by your doctor’s comment on cytoxan, as it saved my life. As to the toxicity, it is the same chemotherapy drug used to treat breast cancer. When I asked my neurologist why more people with CIDP don’t use it for treatment, he said they are scared by the word chemotherapy itself.
Anyways, as you probably read my post on the rituxan thread, it was a lifesaver for me, as I had been a patient at the Mayo in MN for 3 months almost totally paralyzed & they told me I was terminal, that there was nothing they could do to stop the progression. That was in the summer of 2002. I wish they could see me now, so they could eat their words, as cytoxan gave me back a fairly normal life. Feel free to email me if you have any questions…

I would just like to welcome you to the forum, your courage & determination are just remarkable. I came down with a very severe case of progressive CIDP very rapidly in the spring of 2002, & have been battling back ever since. I spent 2 1/2 years in a power wheelchair, with almost no use of my hands. Because I had the progressive form as opposed to the relapsing/remitting form, I was refractory to all of the standard treatments, such as IVIG, plaspheresis, steroids, etc. I finally had to resort to chemotherapy infusions after 8 months of still declining. Since the summer of 2004 I began to walk, first with a walker, then a few months later two canes, then just one cane. Around the house I walk with nothing. I have most of the use of my hands back as well.

You say you will be eligible for medicre in October. In that case I would definitely at least give IVIG or PP a try. You have nothing to lose. Would a cancer patient say no to chemotherapy just because they had no insurance? I just want you to have the best quality of life that you can possibly have with CIDP. Also, I know that there are people on this forum who know about getting IVIG for free, as well as other meds.

You have definitely come to the right place for support, as well as a great place to meet friends. In our vast pool of members we also have a lot of expertise about CIDP. Please post often for support & with any questions you might have. Again, WELCOME!!!
Pam

I wish my partner had thought to search the web and find this group as i am sure it would have been an enormous support to him to know there are many other family and friends out there who are frightenend and confused by this illness. I hope it is of some comfort to see that many of us recover and are here post5ing our stories as testament to that.

i am sorry your mother has been so terrible affected by this. I was in an induced coma for 5 days. I am not exactly sure why they put me in a coma, I presume to give the body a rest and to help in the healing process. It is probably not a bad thing that your mother was out of it during the worst of it, as you say it is pretty scary to be trapped in a body and unable to communicate. At least your mum is now able to answer yes or no, it may not seem like much, but she may now be able to communicate with her nurses (if they are patient enough to try and ask the right questions – it is a bit like charades at times)

the good news is your mum is making progress. It may only seem like little things to you but every knew movement is a milestone. I can remember the day i could touch my index finger to my thumb. I kept showing everyone and they couldnt understand what i was doing but to me it was a huge achievement. And most days i could see some small improvement which kept me positive.

I am not quite 6 months post gbs and i can hardly believe what i went through, it doesnt seem real anymore. So hang in there, there is light at the end of the tunnel …. it may be a loooong tunnel but hopefully she will come out the other side soon.

Frank,
I hope you come here often to read the posts & to post again yourself. I had a severe case of CIDP, but I don’t know how I would have gotten through the first few years without the support & advice of the people here. You are still early on in your GBS, I would expect you to see a lot more healing. I believe that the majority of healing comes in the first two years after the illness has been arrested. I am just curious as to how the doctors can tell someone that they have axonal damage & then tell them that it will heal. It is really axonal damage to begin with, as I didn’t think the axon could regenerate?
Pam

Hi Cheryl,

I don’t have a lot of answers for you, but want you to know that you are not alone. These forums contain great people with vast knowledge and experience. Know that you have found a group of people who will support and assist as possible.

Hang in there … others with greater knowledge will likely reply soon.

doug

I can understand the feeling about the continuos questions about how are you doing…no one knows what you are going through. This week is one year out of hospital after 9 weeks – 2 CCU, 2 specialty hosp, and 5 acute rehab. Even toward the end of hospital stay I didn’t look “sick” other than needing a walker…My stamina is good now, but still have tingling feet and hands…that may be around for a while…but I’m used to it and can ignore most of the time.
Hang in and keep on keepin on.
Al

I am glad that you came to our board. For me my case got caught early and I am thankful. I had skin come off on my hands and couldn’t really figure it out. I get the fatigue and pain. I currently am taking Topamax as I found that neurontin did not help with the nerve pain. Every one is different and so to that everyone has different experiences. Hope that you feel at home here and that you can find some hope here.

Sonja

Dear Piano Woman, Welcome!

My dad was diagnosed in June 2006 so we’re newbies too. He, too, has skin peeling off, but it’s on his fingers.

Again, Welcome!

trevawoman

Hi-

I’m so glad you found this forum and thank you for sharing your story. I am approaching my 5 year hell-iversary and am thankful to be around to tell the tales of what I experienced. Unfortunately, I am on disability due to GBS and many other medical problems I encountered. My fatigue level is pretty high but I have learned to live with it. I was on Remeron for awhile also but no longer require any drugs for depression.

The folks here have enlightened me on more issues and topics than anything my neuro has ever been able to tell me. In the past, I have taken info from this site to my doc and she has since taken time to look at this site. She’s very impressed with our knowledge and insight!

We’re all here for each other to encourage and commiserate – which ever is needed! 🙂

Take care,

Kurt,

I’m a newbie too, and the people here at GBS forums have helped me (and my father who was recently diagnosed) tremendously! Welcome!

My daughter found the forum a few days after I got sick and the feedback and insight helped my family learn about GBS and in turn pass it on to me when I started to get better. It’s a great place and a good feeling to help others going through what we’ve been through.
Al

Cara,

Glad that you have joined the group. What type of vaccines were you given? If your condition persists longer than 6 months and the shots are covered under the Childhood Vaccine Compensation program, you may be entitled to some money. Of course, it is not an easy process and should only be considered if your health does not improve. Did you or your doctors file a VAERS form — Vaccine Adverse Event Reporting System? They should have.

I hope that you get better and can just leave it all behind you, however, there are several of us who developed GBS from vaccines and may be able to help you. 😉

hey friend,
welcome. sorry to hear ur havin a rough time. it ain’t easy, we all have good dayz and bad. Tell us about yourself, war u from, wat u do etc. This is a good place to hang and be creative. Lots of good peeps here. Read some an be sure to start posting more. Not only is it a help line its a place to be creative. Don’t mind me tho, I’m just the village idiot. if u have the time here is a link to my first post on here in some time. I was far away for a long while myself. (Link deleted by administration)

A neighbor turned me on to Multiplayer Online Games.. MORPG’s they are called. I fer git wat that all stands for.. Great timewasters. I have played Star Wars, Everquest, World of Warcraft.
to name a few.

God Bless

Hi and welcome to the forum. 😮

For every question you have, there are many different answers. We have experienced this disease process in a variety of forms. You will read descriptions of acute or subacute GBS, variants, quick or slow onsets, strange sensations and tingling all over — just to name a few. We all experience it differently. That is why GBS is so difficult for doctors to recognize, especially when there is a slow onset and the symptoms come and go without any specific pattern.

Hi Family,
It’s so good to see everyone. I think the best way to find our lost members is to post the name of who you’re looking for and if anyone of us knows how to contact them, please do so. I have names/emails/addresses of about 100 of our members from the bracelet sales. I already sent emails to Brandy, Marguerite and Hauts, and will send more out ASAP
It is heartbreaking that we lost all our old much needed posts. If anyone kept copies PLEASE re-post. I remember posts from members who couldn’t get IVIG’s, they need advice on what to do. And medical insurance issues, how do you get your insurance to pay for treatments, and what do you do if you have no insurance, these posts need to be re-created.