Mark,

Thank you for the kind words. Sometime it pays to be stubborn. One thing to remember is that some people will not believe you and treat you as if you just want to use the system. Rise above it all and persevere — everything will work out just fine. Happy holidays.

Several opinions. seems the spinal in an important test to help determine diagnosis. There not fun but if it gives you a good answer then worth it. I had no pain afterwards. This stuff affects people differently and varied. IVIg saved me. My five day loading dose gave me a flu like symptom. Once the infusion center knew that they slowed the rate and all symptoms went away. I look forward to my infusion of 40 g every 28 days because it gives me relief The one thing I didn’t know about and was not expecting is how this stuff can affect you mentally. Talk with your Neurologist and let them help you. my issue is related to the side effects of steroids as a per medication for the IVIg. When I knew I was snappy to my wife and kids I ask for help and started very low and slow and deal OK now. Keep the faith.

Cjsmo:
So sorry to hear of your current challenges with this disease. Almost all of us have been through the anxiety/depression that comes with our CIDP diagnosis. Some have struggled to find an effective treatment plan. The good news is that there are multiple treatment options; it just is a matter of trial and error. I feel confident that you will find a treatment combination that works for you. For me, it is 60g of Gamunex IVIG every two weeks, and 450mg of Lyrica every day. It’s no cure, and I still have numbness in my feet and some pain in my arms, legs, hands, and feet, but it’s tolerable and I am able to work and live my life with very little in the way of restrictions. You will adapt, and you will find what works best for you. We all do. Just hang in there, and before you know it, you’ll be telling a newbie the same thing.;)

Hi Robert, I’m sorry you have to watch your son struggle soo much.

I havent really got up to date with your sons current treatment etc but would like to wish him and your family all the best and to encourage you all to hold onto your hopes and dreams!

I am 37 now (diagnoised for nearly 4 years) and remain on agressive CIDP medication (IVIG, methylpred, and immunosupressants). I was told i would be lucky to walk with aides, let alone run!
For the last 2 years i have been regulary competing in half marathon runs, in Dec 2010 i completed my first half ironman (2km sea swim, 90km bike and 21.1 km run) and next weekend i compete in the highest mountain race in Zealand over a 28km course.
Please dont give up hope – the journey to your sons dream again is obviously going to be very long and challenging for you all. Dont under-estimate taking one day at a time.
I was a quadraplegic and have had to relearn everything in life again (several times with each relapse etc) from holding a pen, to walking. At times i thought the Docs were right and i would never walk unaided.
Stay strong and focused – yet seek help immediately if deteriorations are noted.
All the best and my your days get easier, and may your son reach his goal!!
Kathy

Hi Erin,
It is tough to wait while you are getting worse. The attitude of the medical system in both Canada and the US seems to be wait and see when it comes to neuropathies.

This is what led us to go to Columbia Neurological Centre. There are 8 such centres in the US and they take it seriously but we had to pay for it ourselves.

The good news is that once my husband got his loading dose of IVIG the symptoms stopped progressing (after 3 weeks) and SLOWLY they are improving.

It is hard when you have children .They need your strength. Do you have relatives who can help? Be sure to use them during this difficult waiting period. If you are at all religious- then pray too.

Kathy from Canada

Hi Jason,
Yes i liked all Pam wrote!

Yup it sure can seem unfair having to deal with CIDP not to mention having lived with other medical conditions. Unfortuantely CIDP isnt tooo specific on who it inflicts itself and learning to life with CIDP is a HUGE thing.

You are fortunate to have a partner you can draw strength from – unfortunately CIDP is something that will probably be with you in some form for quite some time.

As bad as it seems at the moment to be trying to get stabilised and see some light at the end of the tunnel – one day you will probably look back and realise it has made you stronger in ways you wouldnt have preconceived – or that you will develop talents/ skills in other areas that you may not have pursued just yet! Often people find values and perspectives change also as they learn how to deal with CIDP.

I too was youngish (33 year) 3 years ago, when I first noticed CIDP symptoms – with 3 children 6yrs and under, and progressed rapidly to quad status. The next year was spent finding a combination of treatments that worked and rehabilitating. I am now back to my former physical level – probably a bit stronger as am running regular half marathons and triathlons (hopefully soon if all things in my favour i can add half ironman to my recent achievements) etc as well as doing all those jobs listed under a busy happy mums job description, and working partime as a nurse. As i said though i have fought back 3 times from quad status, had my own power wheelchair and home modified as doctors thought i would be lucky to walk again let alone run a few steps (and about another 12 times of near quad) but everyone is different in their response to treatments etc.

Sometimes it is all about taking one day at a time, or even 1 hour at a time, stay strong and positive, draw your strength from whatever you believe in and continue to belive in yourself so as not to give up.
I always found you never had too look far to find others in a worse scenario.
Your energy is so precious at this time – dont waste it on anything other than dealing to CIDP and being the best you can!!

all the best
kathy

Hi Udaman,
I have read your entire story like it was a playbill and I am rooting for the underdog! Did I read this last post correctly, you are not working 40 hours because your co-worker stayed? Why is it that your disability keeps coming up when you speak of your bosses/co-workers? Honestly, the only people in the company that need to know anything about your condition is Human Resources. HR only needs that info in order to supply you with reasonable accom. If you ask for it and it is not given to you, you have the right to file a complaint with the eeoc. I would request it via email so you can show documented request if there is an investigation. Your company will not be able to fire you during the investigation as part of the whistle blower law that states an employee can bring gov’t attention to a company they know is breaking the law. Discrimination is against the law therefore you are protected. You will also be protected from a hostile workplace under the retaliation protection act, you cannot be fired and if they do fire you, they’d better do it with an atty on retainer because once the eeoc gets involved, they will fight for you!
Good luck to you……..
BTW: I have CIDP brought on by undiagnosed Miller Fisher. Symptoms started 6/01/03, the day my life changed! Diagnosed 6 months ago!

[QUOTE=michellemarie] My question is, how many people have gotten back to work, either at their OLD job, or at a NEW one?…

Thanks,

Michelle[/QUOTE]

Hi Michelle,

I had a pretty bad case of CIDP back in 2003. I was able to completely recover from it and work full-time at demanding jobs in the years 2004-2009 (I was also able to go on 50 mile bike rides over hilly terrain!). But it is CIDP after all, and I have had a relapse this year. But I may beat it yet again. So it is possible to beat the monster some of the time. Good luck, and remember that you are not your disease.

-derailleur

Hang in there Linda. We are all praying for you.
I understand 100% that you want something to be done to make your mom better, but I would like once again to gently say that it is standard medical care not to rush into dialysis. The reason I say this is I know that you are so upset with the hospital that you want not to listen to them and are not sure whether you can trust them. Usually the decision to do dialysis is not based on the Cr level (which is not really the danger), but on the potassium level or the fluid status of the patient, or sometimes the acid/base balance or a combination of all the whole picture. The body does not tolerate too much potassium and the heart can act up if the K is too high. If a person cannot get rid of enough water, fluid will build up in the lungs and then it is hard to breath well. When fluid starts to build up in the lungs, diuretics are used as long as the person is still making urine.
There are three kinds of dialysis that I know about–hemodialysis, peritoneal dialysis, and hemofiltration. All require that big tubings be put, usually surgically, into large blood vessels or, for peritoneal dialysis, into the belly. There are risks with doing this as well as the dialysis. Hemodialysis is the most efficience kidney replacement and works fastest, but it is a little hard on a body. Peritonal dialysis is slow and not as good so it has to be done for a longer time and more frequently. It works well eventually and is gentler, but is not for everyone. Hemofiltration is used only in the hospital, I think. It is slow cleansing of the blood and has less problems, but also is slower to work and I have seen it done almost continuously in some patients in the ICU when their kidneys have just failed. Sometimes doctors start with one way and then switch to another for the long term if a long term is needed.
The national Kidney Foundation has a good website for information about kidney failure ([url]www.kidney.org[/url]) and a good brochure that is not scarey about dialysis is at [url]www.kidney/org/ATOZ/pdf/choosing_treat.pdf[/url].
WithHope

Tracy, I had a very mild version of GBS. However, I felt compelled to respond to you. We are from the same area, and I was also supposed to end up at Bryn Mawr Rehab as well. Somehow, my body started to get better without their help and went home after a short stay at Paoli Hospital! It is hard for me to tell people my story on here; being that I had such a mild version. However, the tiredness is something that is slowly going away for me! I know when my body needs rest, and I really try to give it as much as I can. GBS is weird, but I am a firm believer that you are handed the cards you can handle! Good luck and take care neighbor 🙂

Sometimes times are tough, but do not be discouraged or give up hope. Neither should you blame God. I 100% do not believe that illness is a test from God. I think bad things happen in this world, but God does not abandon us–He walks with us through them. I absolutely cannot believe that illness is a punishment from God. How could little kids get cancer? I think God is saddened by pain and illness especially in children. Emma is right–God is with you, just take a deep breath and feel Him.

A rare occurance is a “flipped” port where the port has flipped over and cannot be accessed. It sounds more like the nurses may have just missed the port. One can tell if the port has flipped because it does not feel right and on an xray from the side, it is “upside down”. A port looks kind of like a top hat with the smaller (top) toward the outside. Since Kevie is bruised and sore, it might be a good thing to get an xray or maybe even have the port accessed using “fluoroscopy” which is low dose xrays used for a procedure.

The special spray is probably ethyl chloride spray, made by Gebauer. We call it “freezey spray” and use it a lot with kids that do not like EMLA or need “emergency” access and cannot wait for EMLA to work. It is a spray that makes the skin feel like an ice cream cone has been dropped on it. It is really cold and numbs the skin temporarily so that a needle does not hurt. The problem with it is that it is flammable and the bottle is said to make a nice explosion if dropped–so you have to be careful with it. Personally, I think the stories about the potential explosions are one of the best things about it for the school age boys. Supposedly if you drop it and the top breaks off, the rest of the bottle will propel itself across the room like an open fire extinguisher jet.

I hope all goes well tomorrow and that you and Kevie have peace now and then. WithHope

i would like to say first and foremost–hang in there. It is really, really tough to not feel right and also not have anyone be able to say way that is the case. However, I would also like to say that things as subtle and complex as the nervous system sometimes take time to manifest exactly what the problem is. Also, it is worth remembering that not all demyelinating conditions are inflammatory and IV IgG or plasmaphoresis will not help if it is not due to an immune attack. In your first post, you mentioned CMT–this is a case of a demyelinating polyneuropathy (in the type I cases) that is genetic AND will not respond to IV IgG or PP because the problem is not due to inflammatory attack. For CMT and other hereditary polyneuropathies, there may be no treatment other than minimizing the effects of the illness.

I would like to throw this out there only anedotally. There have been some studies of carnitine helping the fatigue of MS. I tried it and it seems to help the fatigue of my polyneuropathy. It is pretty benign–just a “herbal” supplement that you can find at pharmacies and health food stores.

WithHope for a cure of these diseases and the patience to live well despite them if that is not possible.

Hi Linda,

At least you now know what is going on even though it is not good news.

Hoping the best for you.

Try to stay strong and stay positive.

Please keep us updated.

You have always been helpful to everyone else on the board.

Now it is you turn to be helped!!!

Chris

Man, I don’t see how you work at all !!! I am not able to work at all and still have lots of pain and taking all the meds mentioned on here and then some. Why do you think I am up this time of the morning and checking this site out again. I go weeks at a time and am not able to get out of the house. Hey, count yourself lucky to just be able to walk. That is alot more than alot of us on here can do. I think you know what you need to do, and it was not choice for me, but to quite work. Talk at you later.

The Drummer Man……………

Gabrielle, I feel like we are a little bit sisters since we were diagnosed about the same time and have so many similarities in disease and in life. Hang in there. I wish there were a way to make life better for you right now, but all I can really say is to try hard to keep fighting despite the challenges. I am sure that you have already thought of all this, but I will say it anyway.
1. It does not seem the immunoglobulin is working enough. Has there been thoughts of an alternative? Didn’t you get steroid pulses as well before? Did that help?
2. Keep “agitating” about the disability and advocate for yourself. Unfortunately, for this area in life, you seem to have to be really pushy because the system is so tough to get to make a decision.
3. I did not mean to imply that all of life has been smooth and that my hospital has been always supportive, but I have tried my best to present alternatives and options to them upfront rather than wait for them to think of ways for me to continue to help. This has at times taken a lot of “background” work to think and discuss with others, but it seems to pay off to go in saying “I have seen this need and have this idea of how to fulfill it AND it is something I can do well right now whereas many of the “more traditional” job roles would be really challenging right now. I have tried not to say “I can’t do this” but rather say “this I can do instead”. I do not say this to mean that this is what you should do or that this is the right way, because each situation is different. What seems to me is that the people you are talking to are not supportive and perhaps you need to try to talk to others at your current place of employment. How about another department or area? I know well it is so hard to think about changes, but the tiny point is that it is your life and passion to work and you ultimately are in charge of it. This is meant as encouragement. Really think about job sharing or phone nurse. I know you have thought of all this, but my heart just goes out to you. If you still are blocked out, think about career counseling. There was someone recently on the forum talking about job modification and return to work issues–I think they were disability counselors. For example it sounds wrong that you cannot use a cane at work.
WithHope

Hi Lourdes!

Sorry you’re struggling. Just know that I’ve been there, many of us have. I’m sending my best wishes and hopes for a better tomorrow.

Many blessings,
Kristen
[url]www.cidpandme.blogspot.com[/url]

Hi Skytim,
I am newly diagnosed with CIDP, and have a wee bit of med knowledge as well, (actually became dependant on my ICU colleagues to care for me for 2 admissions, initially GBS then subsequent admission 12 days post initial discharge with /CIDP which has been confirmed/)
From the bit I have read,(Mostly of Gareth Parry, a med advisor on this support board) and from the discussions with my neuro (and his discussions with 6 other neuro) and intensivits the first line treatment seems to be a five day course of ivig. Plasma exchange may also be an option. After this they seem to try prednisone either highish dose oral or high dose pusle therapy. Apparently there is some new reasearch results coming out soon from Dr Parry supporting this pulse dosing. After the ivig and pred which seem to be classed as the proven treatments they then look at the so called unproven treatments including immunosuppressants and cyclophosphamide, cyclosporin etc, possibly in combination with some of the already mentioned above proven therapies.
Basically from my personal short experience with CIDP, if your wife is deteriorating, she may well need her treatment reassessed. in my case if i deteriorate for 3 days in a row it means im relapsing and need treatment reviewed. If not within approx 7 days i am paralysed except for head control, and resp function.
As you will have read everyone is so different, but this is treatable so hang in there and keep going back for more assistance to your neuro.
Good luck, and all the best
Kia Kaha (stay strong)
kathy

I remember those feelings. I was sick, afraid, and I was allergic to Ivig. I ask my Mom to pray to God to take me. After that week I continued to go downhill. We tried steroids, plasmapheresis, with little result then on to cyclosporine. I thought it would never get better. That was in March of 1999. Shortly after the cyclosporine it started getting better. Everyday I could do something new. I went from bedridden-to wheelchair-to walker-now I am on my own (I do have footdrop that appears permanet). I still have pain, but I have learned to cope. I may never be 100% again but I am here.

You hang in there, With the extent of your medical bills you may be eligible for state help. A medical card would cover what other insurance does not, they also help with meds. If that is not an option check with the manufacturer of your medications. A lot of them have assistance programs. Remember the collectors can bark, but they can’t eat you:D . A lot of them are very good to work with your situation. On the other end, you have gone through a lot of change, places like this board are great. It’s hard to find others like us. I also went for counseling and that helped a lot. Maybe it is an option. I am on antidepressants to help with with the depression that comes with chronic illness.

Finally the pain. I have days I wish I could crawl out of my skin. I am on meds but I do other things too. I have a relaxation tape. I light some candles, lay in a dark room away from everyone, and listen to it. I take hot baths ( I like those bath salts too;) ), sometimes I just sit on the porch and let the sun hit my face, or try to read a short story to take my mind off it.

When you don’t think you can fight anymore, dig down and fight a little harder. Remember the people who love and care about you. Take time to take in the simple things you take for granted. We are all here for you. I bet you will do just fine. Good Luck and God Bless.

One of my daughter’s docs brought up CD–the neuro never thought that, the rehab doc doesn’t either though. Initially ws dx as mild case of GBS and that it was resolving on its own, and she would be better in 2-3 weeks. She has not walked unaided for 4 months now. She IS gettting better, thought, slowly and incrementally, after a period of plateau. She had dreadful fatigue initially and still gets wiped out by days when we do too much. (that said, she has resumed daily life activities, such and school and chores, adapted but as normal as possible). She really wants to be ‘normal’ again, ride her bike, all that. She gets upset (naturally) but overall is positive and cheerful and tries to just have a normal life as she works to recover. I did some research on CD and frankly I think though it MAY sometimes happen, it is truly unusual. I’m no doctor, but I don’t think it fits in her case or your case.

from the Mayo clinic site:
…Episodes of conversion disorder are nearly always triggered by severe stress, an emotional conflict or an associated mental health disorder such as depression.
…Conversion disorder is rarely chronic, and most people recover within a month of experiencing first symptoms.

There’s an interesting bit I found at (conversiondisorder.co.uk/)

I think there are still many things unknown in medicine! Good luck to you, stay strong.

It sounds like you have been through such a lot. I’ll be thinking of you and sending positive energy your way.

I was one of the lucky ones. I got “diagnosed” quickly because I was good friends with my primary physician. I say diagnosed because they kept looking at MS but finally decided to go with GBS. Within a week of symptoms I was placed in Columbia-Presbyterian in NYC because I was having extreme difficulty catching my breathe and they thought it was spreading to my lungs. I truly believe the rapid response to my symptoms kept me off the ventilator. Through my recovery, I met several people who had it extremely worse than me. I was released from rehab at the same time as someone who had been on the ventilator and was still worse physically than I was, but she had been in rehab for many months and was able to start functioning at home. You want brutally honest and I can respect that. GBS is obviously scary, we don’t want our immune system to be compromised or taxed any more than it has been but the sanitary and unhomey environment of hospitals and rehab facilities drain our emotions. I for one fought to go home from rehab because of my rapid response to phs/ocu therapy. I still deal with numbness and an inner pain in my hands and feet. I still have trouble with words sometimes. No one sees this and of course no one understands this. April is my 6 month mark and I know I am one of the lucky ones. I remember the others I saw and the determination on their faces to get through this. All I can say is keep the faith. 🙂

I understand what you mean about the doctors! As a parent we not only have the worry of not knowing what is going on with our kids but the stress of not being able to ‘make it better’. If only a kiss and a band-aid would do the trick.

Best wishes,

Jo

Miss 30 Days. We both got GBS in September so I know much of what you are going through. I was paralysed from the nipples down but did not need to have the trach.

Hang in there. It does get better. I’m in a wheelchair but am walking with a walker up to about 80 feet and am feeling much better. The key thing I am getting from these boards is that you shouldn’t tire yourself out too much when doing therapy.

You are young so we can hope and pray that you will have a good recovery. Take things one day at a time.

Good Luck

John Graham
Jupiter, FL

Dear Stephen –

My most memorable quote from one of the doctors who treated my son for GBS in 2000 was, “If you’re going to get something bad, get GBS.” He was right – while the experience was scary, it was treatable and temporary. Another doctor said, “Kids generally have speedy recoveries – with so much growth hormone circulating in them, they regenerate myelin in no time.”

I’m sure you’ve read Ben’s story – he had a severe case and still has nearly completely recovered.

So as long as your grandson is in a competent hospital, the prognosis is very good.

Please let us know how he’s doing.

All the best,
Lisa

Hi Illmatik,

You are not alone with this illness – or at least as long as you stay connected to this site. I am over 9 years post and still deal with depression. First reason is because so few people have ever heard of this illness so we feel very isolated. That’s why it is so good to keep in touch with us on this forum – we understand. Second reason I too understand is that I am single and have not been able to form a relationship since I got sick. I work 40 hours a week and almost every night I go home and almost straight to bed to at least get comfortable with my legs up. I figure I have a two hour window a couple of nights a week to do something with someone. I don’t have the stamina to do a lot of social activities – even at 9 years post. Finding someone who is extremely patient seems to be almost impossible. I do know of two members here that got together and ended up getting married. It is rare but so beautiful.

I would say get to your doctor and get on some meds for depression. You might find that these meds also help your physical body some too. I am going to my doctor in a couple of weeks and will be asking him if I can try the new Cymbalta as it advertises on TV for helping with depression and body pain – like our nerve damage.

Also, stay current here and you might be able to help someone else understand what they are going through and that in turn would probably make you feel good about helping someone. Whenever you are down, do some posting here asking for help.

Don’t know if you realize this site was down for a few months and it has come back up a little different. Apparently, most people are posting in the “main forum” category. So be sure and click around a lot.

I hope this helps. My heart goes out to you.