We all struggle with this. But everything will work itself out in time. You are adjusting, and that is terribly hard, almost as hard as the condition itself. There are so many feelings that we have to deal with, and with patience, time and coping strategies, we get better at handling it all. I write notes and lists to myself to keep things straight, and that helps with my memory problems now. With your 2 docs and the 2 different approaches, just think it through and do what you feel is right for you, step by step. We are all in this for the long haul, so find a few moments in your day to enjoy some beauty and happiness to help keep the sad and angry feelings at bay.
One day at a time.
Hugs: ((((( )))))

jc10,

I am an older member of the forum. Diagnosed May 2005 with GBS. Knowing now what I didn’t know then, if I were you, I would stick with the doctor who is being proactive. IVIG can’t hurt. You will either see results or you won’t. Praying that you do. It might take some time, but since the doctor wants to do the IVIG, I would go with it.

As for the depression, I don’t think it is specifically a part of the syndrome but a part of your reaction to the effects this has on you, your health, and your family. I would speak to your doctor, either neuro or gp, about a mild or low dosage anti-depressant. My neurologist ordered it immediately along with an anti-anxiety medication. I am off the anti-anxiety, but still on the anti-depressant. But, that is due to other factors than the GBS. It doesn’t have to be a permanant medication, but it could help in the short term to help you get through the worst of the depression you are in from dealing with the ramifications of GBS/CIPD.

Just think about it. You seem to be struggling emotionally and it might helpl.

Depending on the age of your son, you might want to talk to him about what is going on with you, what he should expect, how HE can help make things easier. Being on the patient end of things and not being told what was happening, it has to be much harder on a family member, especially a child. He may WANT to help you, make things easier, but doesn’t know how or what to do or ask. He may be scared that if he talks about it, something bad will happen. I would think if he were 9 or older and not immature for his age, he is fully capable of understanding what is going on, feeling scared for you and himself, and NEEDING to be able to do something.

In my experience, it is very bad to underestimate the understanding and desires of children. It leads to frustration, anger, and resentment on thier part. You may feel you are trying to protect him, but sometimes, letting the kids know what is going on does a lot to reduce everyones stress level.

You will still be the best MOM you can be, but you are now physically different and trying to stop the progression of this horrible syndrome.

If you would like to talk PM me and I will get in touch with you.

Tonya Correll
GBS May 15, 2005

Forget the everyday neurologist and GPs.

Go to a Center of Excellence. If you cannot, go to a teaching University where they have a Neuromuscular specialist.

Knowing now what I didn’t know 2, 5, 10, 15, 20 and, yes, even 30 years ago, I would run away as fast as I could from any doctor who told me “wait until you have severe disability” to begin treatment.

Nonsense.

Prompt and effective treatment is of paramount importance.

I was recently diagnosed with CIDP (within the past year). I am a mother of a 7 year old girl. It was so scary for me in the beginning too. I felt like I could not be the mommy I always had been. I was even having problems climbing up into her loft bed at night to read with her. I would sit there in the dark crying silently while she fell asleep. I just could not shrug off the depression and anxiety either. I felt somewhat alone too because I did not want to scare my daughter so I did not talk about the diseasae with her. My husband seemed to pull away too. He doesn’t deal well with this. So for a while I suffered in silence. But as the IVIg kicked in and I started to feel like myself again I climbed out of the depression. I talked to my daughter about CIDP. I did not give her all the scary details because I don’t want her to be worried about mommy and think I am going to end up unable to care for her. But I did let her know I needed help from time to time and that sometimes I need to take it easy so that I don’t have pain. She has been great and she feels empowered to help me now instead of just scared and wondering what is wrong with mommy and why am I so sad. My husband has come around too. I think the future scared him just as much as it scared me. We both did not know what to do or how to act right after diagnosis. My CIDP is still active. I need IVIG every 3 weeks. I am trying to push it to 4 weeks this month. Start the IVIg and stay with it as long as you seem to be getting some relief. I did not get total relief at first but now I seem to get better with every IVIg treatment. Since I was diagnosed quickly and started IVIG almost right away after diagnosis I don’t have any permanent damage (yet at least :-)). Stay with the IVIG as it can’t hurt and might make all the difference with your condition down the way. Good luck.

Tonya gave you some very good info and stuck her hand out to be a real friend.Thanks Tonya !
JC10, don’t be afraid to take something for the blues. Cymbalta and Lyrica have helped me “Mostly”.
Have a friend to come by and pick you up and take you for a little drive and maybe stop for a snack and just some good fellowship. I know if I have something planned each day that I like, It makes it easier for me to go to sleep the night before and easier to get up the next day. Just try to have something planned to do, and just love that child…as I know you do. 🙂
God bless,
Drummer GBS 1988

suggest this post be combined with the same topic posted in another forum

Hi jc10, you sound a lot like me. I just posted a new thread in the main forum. I’ve been going through similar stuff as you. They “weren’t” sure what it was but I had weakness, tingles, no reflexes, low pulse, cold feet, tight muscles and saw some Dr’s. I was rushed to a hospital for what Neuro thought was GBS. I had tap done and like you, negative in the protein. I did however have fluid in the spine around L4 and L5 and was told this could possible be GBS. I did days and days of IvIg treatment in ICU and then back on the floor. I responded well to it and left the hospital shuffling around.

I got better for a few weeks and then it started again. At the same time, they were tossing up the idea of maybe Lupus, which we STILL don’t have an answer for.

As my legs got worse, my Neuro said, ???? CIDP, let’s do biopsy and another round, but just two of IvIg.

I wanted the biopsy done BEFORE the next round of IvIg because I wanted the nerve looked at while I was feeling bad, etc. I had this done and it came back saying yes, the sheath is being damaged. Ok, now what?

So I go back in for two rounds of IvIg via wheelchair. 5 days later, I was skipping around my living room with my daughter who is 5 in happy tears!

Two weeks later, I can hardly walk. Getting a walker today. Sigh, I use to run…..a half marathon in Jan actually. I did 9 minute miles and pushed a jogging stroller most of the time. 🙁

I know the sadness. I’m a STRONG personality gal. I was raised with 3 brothers and being the only girl, I was TOUGH. I’ve never “not done” for myself or had the “can’t” attitude. I never waited for a man to help me with things I needed, I did them myself. I was raised this way. I am now dependent on everyone around me. This includes my 3 and 5 year old!

I would never let anyone see me cry, I was to proud. I cried at night in the bed at 3am because I could not sleep. My husband(God I love him) would hear me and hold me.

One night about a month ago, just before round 2 of IvIg I was bawling my eyes out in bed. He grabbed me and reminded of something I’m going to remind you of. He said to me:

Mel, it’s ok to cry, you’re frustrated as am I, but don’t be sad. You have a lot to live for girl. You have TWO beautiful babies in there that love their momma and think the World of you. You have me, God, friends and family by your side that love you very much. You have TO MUCH to be happy for and you have TO MUCH to live for. Cry because you are frustrated, don’t cry because you are sad. No woe’s me Mel, that’s not the girl I know and love and remember all the things you have to be happy for. We will fight this, we will get through this and all in all, it’s just another storm in our life, I love you.

That was the last night I cried because I was sad. I’ve cried in pain, LOL, I’ve cried happy tears, I’ve been mad and frustrated, but I stopped the poor sad me cry in the middle of the night.

You have a son who needs you. If you are raising him by yourself, you are stronger than you give yourself credit for. You can get through it and get better. Might be a long hard road, but when are we NOT faced with a challenge you know? As busy moms we deal with a lot and have a lot on our plates. So we walk slower now, LOL, or not at all some days, but it doesn’t change the person we are on the inside.

Find your calm, find your strength and wake up everyday determined to get better, fight this and live……someone VERY important is counting on his mommy for just that.

Let’s vent together ok? Ha, I know how tough it is NOT “knowing” because I’m down the same path. I say if you can get the biopsy done, do it and do the IvIg, see if you respond. All in all, I’m here anytime you want to vent and chat! I’m needing an outlet to! 😉

Jc10 …

Sorry you are having such a down day …I think we have all been there in that respect . You do have to allow for those days just as you do for the good days . I think it makes the good days that much sweeter . I think sometimes you have to take each day as it comes and surround yourself with people who can help .
I am a Mom too so I can understand always wanting to be SuperMom …. but just remember ..no matter if you are late or not …they will always thing you are !
I hope lots of good days are ahead for you !

Kimberly

jc10

Getting a diagnosis is sometimes difficult. Getting treatment can be tougher. I wish I had early intervention. My CSF was only elevated 10% when I finally got diagnosed. But prior to diagnosis my symptoms were less than convincing. I was told that I needed to stop stresses in my life and stop wasting my money on Drs. Several years later my neuropathy became more active. Five years after diagnosis I was put on disability.

The story need not be sad however. You have an opportunity for very early intervention with IVIG. The IVIG treatment may slow or arrest progression in early cases. Not everyone becomes disabled, but why wait and see?

IVIG is made from many donations of human blood. It is a natural product, spun down, cleaned, and prepared. I don’t think there is much chance of a reaction, and it should only help. Ask your Doc about any concerns. I would rather be proactive than just wait and see.

By happy and look for the best in both your treatment and in life. That always helps.

Take care
Dick S

Dear, dear fellow confused numb sister, I totally understand your fear and sadness. Not everyone has a great support system and even when you do you may need an anti-depressant to cope and that is ok. I am so confused and scared, I do not know where to turn some days.

To me IVIG was scary, I had it in patient once a day for five days. I did have some reactions to it but also benefits. However, the jury is out for me as to whether I am relapsing or regenerating. It has been four weeks. I am going to start a thread for info, but just wanted to say it is ok to cry, and talk to your dr. about it. God bless you honey. Keep posting and sharing.

Hi ya sweetie! I understand the school and popularity contest….WHY do women do this? It’s SO mean! My daughter just started K and I’m an artist and did a lot w her pre-K class last year. I went in made frames w 20 kids, tie-dyed shirts and screen printed w them, did face painting, made Vday crafts and Christmas crafts. At her new school, Kindergarten, I was asked by one of the “busy bee’s, I’m a rock star mom” to join the PTA since I’m always doing fun stuff w the kids and they could really use me. When they saw me show up w a walker, I got the looked down look and the poor you look and was told, oh, can you make it to the meetings? Can you be counted on like [I]this[/I]? I laughed a little inside and said, whelp, guess NOT and I strutted myself away shaking my little butt as best I could in my not so hot grannie walker w wheels!

O well, I don’t need the stress of miss goody two shoes stepford wife looking down on me and feeling bad for me. The truth is I could STILL probably run circles around all of them, but I don’t need the stress to fit in, I like who I am and what I can do, and EAT ME if you can’t deal with it. I’m not the one who’s out, they are. Funny thing is, I actually feel sad for that type of crowd……I might be like this, but I’m honest and true and real and don’t need an 85k car w my nose in the air to make me feel valuable. I have my values, raise my kids with them, and I only want to be surrounded with love and care, even if it is just my husband and kids.

The money thing is not easy. I know all too well, but just keep in mind what is most important and the rest will fit in. So what old car and used clothes? I SPORT those too, but it doesn’t define who I am and what I stand for and how I live my life. All in all, you have to do what is best and get by how you can. As long as your heart is in the right place and does the right things, you’ll get by how you should you know?

About my testing. I did have the test for Lupus. I do have positive ANA with the Homogenous strand over and over again. My titer is not screaming high, but it’s above normal. My back end test keep coming back w nothing, but he told me since I was on steroids that this could be the reason. I had to get off steroids and wait three weeks to do more blood work to see if this shows anything else on the back test for Lupus. I just did my blood work Thursday and now I’m back on steroids to see if I can feel any better. I see my Rhemu Sept 8th to get results from the test. We will go from there. It was SO funny the last time I saw him. He says to me, you know, I think you have GBS! I laughed and said have you NOT heard everything I’ve spoken to you about? The hospital stay, ICU, IvIg, I mean are you listening to me? Geez! I don’t really care for him as he has the personality of a rock, LOL, but it will take 6 weeks to see someone else and Lord help me, I don’t want to be poked and poked by another Vampire Dr….ha, that’s what I call my Rheumatologist!

The fluid was found in my spine from a CT scan on my lower back. I have tight back muscles as well, and not sure if it is just over working from my legs not working! Sigh!

Well, I hope your day is better today. It’s Sunday, my absolute FAVORITE day of the week. I just love Sunday. A great family day, a day to veg and sleep in and just be relaxed. Keep your chin up, remember what’s really important and look forward to yet one more day!

Chat soon!

[QUOTE=jc10]Thanks so much for your message. You are really strong and it must be such a relief to have the support you do. What a rollercoaster you’ve been on though, so frustrating. Your husband sounds amazing. I wish I had that kind of support, I’m pretty much on my own. After my divorce when my economical profile became very lean…i had to go on food stamps for a while and apply for reduced fee school lunches. somehow the lady from the pta decided to leak that info out into the mom population at school after we had a little run in. she is the social butterfly at the school. well that combined with the fact i was at the time driving a beaten up 93 civic in an area where everyone else is driving their 85k suv’s didn’t help my popularity rating… so over the past few years i have really withdrawn from society at large…and now with all this i feel even more isolated. thank god for support forums like this!

how did they find the fluid in your lumbar spine? was that via MRI? They have only imaged my thoracic spine and brain so far but he has ordered a lumbar mri now, that hopefully they can schedule me for soon… i have huge lower back pain and you can feel a clump of tight ligaments etc..i think my back must be compensating for the weakened muscles..

I thought there was a definitive test for lupus, no?? I know my dr. said he tested me for that and it was -. So what are they going to do for you next? Have they done genetic testing etc?

I will be keeping in touch with you and looking for your updates. I start the IVIG Monday am…will take my laptop! I’m going to try and get my house nice and clean this wknd…just in case i’m feeling too yucky next week to do much. I hope you (and i) find some answers soon!![/QUOTE]

Hey JC10,
Going in Monday myself for a test loading of IVIG to see if it will help with my facial problems. Neuro decided that we should do this due to my throat is going numb and have lost all taste and smell. This is what orginally put me in the hospital (GBS). Anyway I hope all goes well for you on Monday! 😎

Daren

Hope your infusions are going well. I ended up with rigors this time. Not a pleasant experience but they got it stopped in 15 minutes. Slowed down the rate and all went well. It ended up being a long day and was able to stay home and rest all day. Keeping fingers crossed this will help.

Best wishes and prayers!

Daren

Dont feel bad about having sad days—i think we all have them with this cidp. Its hard not to remember all the things we once could do so easily and enjoy—that now seem so difficult.It seems when im having one of those days of feeling sorry for myself—something will happen that makes me realize that even thought things are different–things could be worse. I was having one of those days today while driving—(one of the angry-why me days) and i happened to notice a bulletin board outside a church that said—“life is 10% what happens to you and 90% how you deal with it” its funny how such little things can make a difference, I took the message personally and snapped out of my mood–lol Lori

Strong emotions in a situation like this are completely normal.
We will probably have to deal with all kinds of them from time to time.
The important thing is, not to allow them to overwhelm you as a person.
Don’t count your troubles, instead count your blessings and life will be sweeter again.

I have serious, intense emotions, and sometimes my mind becomes clouded with my problems to the point where I can’t focus on the good things, just ‘a pity party for my self.’ It helps to see it for what it is…yes, we have feelings and that’s normal, and we have a right to express them to some extent, but the main thing is ‘what am I doing to help myself with what is left’? I find that if I get locked into one of those bad moods where I’m really angry and miserable, it helps me to realize what’s happening, and to flip my mindset. Instead of crying and complaining, I think of something I can do, and do it, and just the fact that it got done cheers and encourages me a little. Depression often results in me falling behind in my chores and not caring for myself, but if I can redirect my focus on the things I can still do, then I can do a switch on the negative thinking. Then I start getting things done again, and life seems a lot better.

The Serenity Prayer
“God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.”

With us GBS’ers, we know that we can’t be sure of the things that are changing until much time passes, & with positive efforts to change them.
It is hard to find courage when our minds are tired all the time, but maybe it comes in a different guise…just the day-to-day coping with all of this.
And wisdom is hard to gauge, maybe it’s just realizing that we are learning, and can see things in a more mature way as time goes on in our dealings with GBS, as we do with the other aspects of life.

I’ve cried more in the two and a half years since I started suffering with CIDP than in the 47 years before. Anxiety? Depression? Panic? I’ve experienced more of these emotions in the last two and a half years than in the 47 years before. I’ve cursed and screamed at God for letting this happen to me. But the absolute worst thing about having CIDP is the terrible effect it has had on everybody who loves me. I hate seeing them suffer because of their concern for me.

[QUOTE=Goodney]I’ve cried more in the two and a half years since I started suffering with CIDP than in the 47 years before. Anxiety? Depression? Panic? I’ve experienced more of these emotions in the last two and a half years than in the 47 years before. I’ve cursed and screamed at God for letting this happen to me. But the absolute worst thing about having CIDP is the terrible effect it has had on everybody who loves me. I hate seeing them suffer because of their concern for me.[/QUOTE]

We must get it together, one day at a time, one thing at a time.
Our families won’t suffer as much if they see us accepting and dealing with the challenge of this condition, with courage and dignity. They too will have their own hard times in life, and we will be their role models as we face & handle these challenges. Yes, it is a terrible ordeal of suffering and challenge to be faced with something awful we cannot control. But in this life on Earth, a fallen world, there is a vast range of these experiences for all people, whether they deserve them or not.

Jesus Christ told us: “In this world ye shall have tribulation. But be of good cheer, for I have overcome the world.”
There is coming a time of complete healing for all those who belong to Him.
“There will be no more pain and no more sickness, no more crying, no more death, for the former things will have passed away.'”
This is our ‘blessed hope’.
And in the meantime, “I will hide myself under the shadow of Thy wings, until these calamities be overpast”. His Spirit will sustain my life as long as He wills on this Earth, and afterwards He will receive my spirit to Himself for eternity.

All I can say to those beautiful words is Amen. I know acceptance and faith are key; I just find them in such short supply sometimes…

[QUOTE=Goodney]All I can say to those beautiful words is Amen. I know acceptance and faith are key; I just find them in such short supply sometimes…[/QUOTE]

Goodney, are you working out with simple range of motion exercises?
(there’s a link in the General Forum) This type of exercise gives some immediate relief to the pain and crippling, and improves strength and mobility. And the exercise need not be strenuous and painful…just mandatory, requiring time and patience.
I know how hard it is to deal with all of this; we are all on our own journey, but we share the map with each other. Have a good day, friend.

Thank you, D.U. I do get exercise, and it definitely helps. I am simply a worrywart. My wife and I had just gotten our youngest daughter off to college, and as empty nesters we had plans to travel and really enjoy our time together as we moved through middle age. Within six months I got hit with CIDP. That was 2 1/2 years ago. It turned our lives upside down, and I am still trying to get my bearings in this extraordinary situation.

Even with CIDP, we can still fulfill some of our dreams and plans.
Think ‘tortoise’ now, not ‘hare’; and sooner or later, somehow or other, you’ll get there too.

[QUOTE=jc10]Have been getting more and more depressed, can’t seem to stop thinking about all this…..

My dr. has at least decided to let me stretch out the IVIG treatment over 5 days instead of the original 2 days. I start Monday morning.
He still thinks it is likely CIDP but he is not sure since my CSF protein and immune markers were all normal. I spoke to another Dr. to see about getting a second opinion. He said that after reviewing my records that he strongly disagrees with my current Dr.’s RX for IVIG, due to the lack of elevated proteins etc. He said he only orders IVIG when a patient has become severely disabled…I’m still walking ok, just weak and having a hard time with stairs or walking any distance but feels like I’m getting weaker every day and the numb feelings are spreading He also said he would require the biopsy, of which my current dr. is wanting to wait to see if I respond to IVIG before we do that. I don’t know who is right or what the best course of action is. Part of me is grateful I can even try the IVIG but other parts of me wonder, since we don’t have a firm dx, if it could even be contraindicated…

I keep trying to talk myself out of feeling so depressed but the sadness is overwhelming, to the point I’m wondering if it could be a side effect of my illness. If any of you have any tips on how to deal with the depression or the feeling “so different” from everyone else, let me know. Of course, I’m grateful for every day but being a single mom, I’ve been obsessed with how this may effect my son’s life. I want him to be happy and feel secure but I feel so insecure and scared right now that feel like I’m falling short of being the best mom I can be…. this has been his first week back at school and I already screwed up yesterday and forgot it was early release day so I was 25 mins late picking him up![/QUOTE]

When I was admitted to the hospital, I was actually started on the IVIG treatments before I was diagnosed. They did tons of tests on me, as you know. My doctor has mentioned doing the biopsy, has not ruled it out, but he doesn’t want to do it if he doesn’t have to.

I’m not the one to make it all better for you but I can be there to listen. I look strong and happy go lucky on the outside. All of my nurses would comment about how brave I am for being so perky and my neurologist told my husband many times that he doesn’t think I understand the seriousness of what is going on with me or maybe it just hasn’t hit me yet.

How old is your son, if I may ask? He is going to admire you even more because your not just a single mom, your a single mom fighting every day to do your best for you and for him. He will see that. I have recently learned that my great uncle and my aunt also have this same disease. As I was growing up, my aunt was a single mom. I remember her being very sick (she has several other serious diseases on top of this), my cousin Zac, never left her side. He learned to understand and once he is old enough to understand, it will be easier.

As far as the depression being an issue, we are all going to have it. If it’s too much for you, don’t be afraid to mention it to your doctor. Many people take extra medications just because of the side effects. But if you need an ear, I am here.

[url]www.frugalvillage.com[/url]

Here’s a website for anyone who is facing financial challenges.
It’s fun, supportive and has lots of practical advice.

[QUOTE=jc10]You’re so sweet, thanks. I need to do some inner work now and find ‘my inner warrior!” i don’t want to be depressed and whiney….going to try and get tough, maybe all the steroids surging through my veins will help with that! 😀
one day at a time, right. Tonight I’m going to have a glass of wine and enjoy the fact that my ivig headache has subsided!!! thanks again for the support, my parents haven’t even called all week since i started the ivig but i already feel like i have family here now, who understands and doesn’t judge me. that’s priceless. i hope i can be as comforting to others as many of you have been to me these past couple of weeks.:)[/QUOTE]

JC dear,

You already are tough!! You’re right, it is one day at a time. You may get to where you can say, it’s only one hour at a time and if you do, that’s okay too. For me right now, it’s definately one hour at a time. But it’s okay! How was your glass of wine? I would LOVE nothing more than a glass of delicious Moscato …. now I’m depressed, LOL! I just assume that will all the medication I am off, I’m probably not allowed to have a glass. This is a good question…

Everyone here is so welcoming and you’re right, they don’t judge but they do understand. We have found the right place. When you can’t vent to family, you can vent here. Like you, I hope that I can be just as comforting to others as they are to me. Who knows, you may find some new life long friends. I have lost all of my friends, every single one of them. It doesn’t bother me though, as soon as I was unable to do for everyone, I became worthless to them and not one person has offered for me. But that’s the least of our concerns, right!? 🙂

JC,

Haven’t heard from you or seen you post lately… how you doin hun?