O! Ho! At least can’t forget your postings having full of joking, teasing …. nice to see you doing well… keep going strongly …..

These are common problems; for most of us, sound and light stimulus is very jarring to our damaged nerves, particularly during onset and initial recovery.
A couple of suggestions to diminish the shock, discomfort & disorientation:
1. Ear muffs, ear-phone pads from old electronic equipment, or foam ear plugs (thrift shop, hardware store)
2. Sunglasses, or foam eye mask (dollar store (looks like the “Lone Ranger Mask” except no eye-slits)

He could keep these things handy in a back-pack to use whenever he’s dealing with light or noise stress.

One question, you mentioned that your son puts your hand over one of his ears to block out noise. The other ear too? Some of us had initial hearing loss in one or both ears, so something to check out for his safety.

Welcome to our forum, HuhWhat.
Gentle hugs. ((((( )))))

“Inch by inch, life’s a cinch; yard by yard, life is hard.”

I think I understand from your comments that you have not been taking steroids for many consecutive days at a time, but rather “pulsing” yourself with steroids–in which you have had the steroids over 5-7 days every week or two. You also do not mention a known chronic immune mediated disease (like CIDP which is common here). Pulse steroids are different from daily long term steroids in the “dependence” mechanism. You are not as much at risk of the classic adrenal suppression where the adrenal does not work, but ARE at risk of your body not being used to or able to mount stress responses (because it does not have to–the oral steroids do that). You realize that self-medicating is not wise, however, the underlying process –terrible asthma and terrible eczema–were intolerable to you. To get a smart and safe transition off of steroids, you need to have help of a physician that will see both of these. There are a lot of ways to treat asthma and eczema OTHER than systemic steroids. Think carefully about what causes you to feel the need to pulse steroids. Is it breathing problems or terrible itching? If so, to safely stop, you probably will need inhaled steroids or something like Advair for the asthma and topical steroids for the skin. The point is that there can be a medical reason that your body has felt better on steroids and that this needs to be addressed as part of finding a better and safer way to control the asthma and eczema.

Part two. People feel better with steroids and you say this in your post. You may have very real medical reasons for steroids that your body was telling you, but there is very often something addictive about steroids AS WELL and it is really hard to separate these apart completely. One important way to help get over this can be NOT to stop steroids cold turkey (that is hard medically and mentally), but rather to spread them out so there is not the ups and downs. You, then, get the medical benefit, but not the “rush” of a pulse. For example, if you take 25 then 20 then 15 then 10 then 5 mg a day for five days every two weeks, you get close to the same amount of steroids by taking 10 mg every other day. It is probably better to stop to either change to this and then slowly go down to, for example, 7.5 mg every other day for two weeks, then 5 mg every other day for two week, then even slower from there OR to reduce the “height” of the pulses–for example, starting at 20 then 15 then 10 then 5 mg for two times, then 15 then 10 then 5 and slowly decreasing from there. The point is that your body and mind have gotten used to the pulse steroids and it will be very hard and not very safe to stop them abruptly.

None of us advocate “self medicating”, but when people do this, it is important to think not only about fussing about the danger of that, but also that there may be a very real underlying desperation to have something be different and better. It will not be safe and it will be really hard to stop steroids without helping what this was as well. I hope that this makes sense and I hope that you get a good plan to safely get off the steroids.
WithHope

How all of you are? I am visiting this site after August,09. I do not know how I stopped visiting this site… but somehow I missed it..

Anyway, the subject seems to be interesting .. My blood type is B negative .. with about 5 years old GBS.

I would like to know more about it.. pl keep posted.

Hi Yolanda, it must be very hard for you to see your Mom like that but let her know that there are other people out there that are with her and that have been throught the same things that she is going through and she’ll make it….I was diagnosed with cidp in May 2008 after a 77 day go in ICU were I was totally paralized and had a treck I also developed anmmoina (sorry for the spelling lol) and was on ivig, steriods fentinol, gabapentin just to name a few, what a nightmare!!!!! I walked to work everyday 5miles and was very active it knocked me for a loop…but when I left the hospital I was using a walker and now I can walk and do most things that I could before and am taking no meds at all so tell your Mom to hang in there (I was 51 when all this came crashing down on me and my family) it well get better and there is a light at the end of the tunnel if you need to talk I’m here and if your Mom wants to talk thats even better….but we are all here for both of you..keep well and hang in there Brenda:)

I was treated at Duke last October! Aso been to University of PA Hospital. Both places are good places. Mark Brown Dept of Neurology at University of PA Hospital and Jules Vern at Duke Medical Center, Neuro Sciences Building! Both seem to be good doctors! Mayo I know nothing about but have heard it was really good! Hugs
Linda H

I am 69 years old and have had GBS three times, the last time in 2002. I can play my piano but don’t do it much as I get tired sitting at the piano a long time. You can get better after two years. Good luck to you.

Hi Joanne,
Glad you found this group as there will be heaps of answers here to many of your questions.
Am sorry you have joined the ranks here, as it definately is a challenging condition to conquer!!!!!!
You have already had good response from fellow CIDP’ers (or others with experience etc) so wont repeat the info, as MarkEns says it is all so very individual as well and unfortunately drugs/treatment can take time to show their benefits, and to get true accurate pictures of what is going on is a sure test of ones patience.
I especially wanted to pass on my hope that things turn around speedily for you, yet when things seem pretty gloomy progress often never appears to happen quickly enough!!!
Also in my experience (was diagnoised 2 yrs ago, and at worst was a quad status) it helps to keep things in perspective on a daily basis, I felt i never had far to look to find others worse off. I too felt the timing couldnt have been worse, (was primary caregiver for 3 children 2, 4 and 6yr olds, and a very partime nurse – as never believed in placing my children in childcare) yet in hind sight with all the support and love shown over these harrowing times it was the ideal time in a way, and by taking one day at a time we got through those pretty dark days. My family have grown through our battles and are stronger and wiser for it. My now 4 yr old still recalls being strapped into my power wheelchair as my arms couldnt hold her securely as we walked the other 2 children to school. (Now we all literally race to school!!! – or i piggy back the 4 year old!)
Accept all offers of help. People feel useful doing what you may consider mundane chores, and they dont offer if they dont want to help so dont hold back in accepting their offers.
All the best and am pleased to see you have been started on the right track treatment wise.
Kiwi chick

Hello and welcome to the site! I think everybody explained it very well and want to wish you my best. Hope they can get you treated and feeling better soon. Hugs
Linda H

Hello! I was reading your other posting but don’t have the experience in this to answer your question. But I just want to let you know that I am praying for your son and hope he gets well soon. You have certainly been through quite a bit. Any time your child gets sick that takes a huge toll. You worry sick and can’t help them like we as mother’s normally can! Wishing you my best! Sending Cyber Hugs your way!
Linda H

The concept of Bioness is the same as the neuromuscular electric stimulator. It depends upon the individual’ s evidence of coverage to cover Bioness or not. –eden

So glad things went well but hate to hear of the tummy ache! Hope this treatment helps you get better! Thanks for letting us know how you did! May things get better for you soon!
Hugs
Linda H

Well the Phenergan would certainly help the nausea and vomiting but the other drug is still a steriod. Maybe tylenol with Codiene would help. Or taking a low dose of that steroid to see if it effects you in any way. I would ask lose dose first before taking it full fledge! Some people can’t take steroids and you might be one of them. Topamax is also great for migraines. Ask your doctor if any of those drugs could help! Feel for you so badly!
I get really bad migraines anyway and when I feel one coming it takes alot to get it controlled. 800mgs Ibuprophen, 1 300mg Gabapentin, 1 Tylenol with Codiene and 1 `10mg of prednisone! Now that’s a bad headache! LOL! If I don’t take that regimin, I start puking my guts out and then have my head dived in a pillow with cold rag on my face! Hate nasty headaches! Hope they get you feeling better soon! Hugs

I agree that we should not overdo exercises or activities of daily living. We need to space our tasks regularly. In order for us to cope what happened, we need to accept what happened. The mechanism of ” denial” doesn’ t work as part of recovery. – – Eden;)

I have,nt heard of it is it suppose to fix you or what have you heard thanks:confused:

To: jodylynn67

What a terrible time you are having! I can only say that I feel for you as you go through all of these difficulties and traumas and worries. I too have had many things come crashing down on my life at various times, and I know how hard it is to face it every day and keep trying to cope. :confused: I pray that the Lord will send His answers and help to you and your family.
God Bless and keep you!
— Donna

Hi Kimberly,
How’s it going? Any improvements on your sleep patterns yet?
All the best!
–Donna

I don’t have GBS but CIDP but I just wanted to wish you and your family my best and hope your sister gets well soon. It will take her some time for healing and the more she is able to do the best of her chance in recovering. Lets just hope she starts getting some improvements soon and gets well soon. I will keep you in my thoughts.

Hi Donna-welcome to the family, I hope you feel at home here to show your grouchy side or go to On the Lighter Side for laughter. Sounds like a lot of people have given you good advice, I just wanted to write and say hi.
Emma

I hope you get lucky for your wife and find the brace she needs! She sounds like my mom! My mom is so close to being in a wheel chair herself but refuses to give up! Let your wife do as much as she can. She sounds like a fighter and it trying so hard not to let her legs give into that wheel chair! She’s trying so hard and that I admire her for! I wish you and your wife my best and hope that she never see’s that chair! I will keep her in my prayers! Hugs!

Welcome to the site! I have CIDP and not GBS and it will be hard for me to answer your questions. But I did see a posting not too long ago about the mylelin sheath. Can’t remember the number though but it was slow in healing. Not every patient is the same in recovering though. Each person is different. Some in here got diagnosed and 3 weeks later doing great while others in here it took them months and even years to recover. And then some have really never recovered completely.
I know you worry about work and want to have that life back again and we all have bills in our life that worries us. We have to eat too! Which can be a strain on us and stressful for us all not knowing our futures.
I would talk this out with your doctor first. He might not think you are ready for working just yet or he might say you are. But he may limit your work.
One thing you have to keep in mind here! Your body is more important than your job right now. You can always go back to work when you get well if it’s okay. But your life on the other hand is more important and more valuble! I hope you get well soon and see a fast recovery and do get back to work again. Just don’t want to see you pushing to early and landing in a relaspe. That would not be fun at all! I wish you my best in here and hope your back on your feet very soon!

Just checking in to see how you and your new legs are doing. Have you heard from your friend or was Angel Cher able to help?

Way to Brandy! She is indeed a fighter and am glad she is achieving her goals and I wish her my best and pray she never see’s the GBS ever again. I will keep her in my prayers and hope all goes well for her. Great to hear she is doing good but hope the GBS stays away!

It’s in the Adult CIDP Section. It announced a problem we had over the weekend and was telling all the members to read the rules and regulations in here. Telling us to watch what we say to others and not to offend anyone. Just being careful of how we say certain things that might offend another person. First time offense is a warning, second time is being kicked off the site. Hope this helps!

I could not take the Cymbalta either! Gave me the panic attacks, upset stomach, chest pain and the drug scared the living heck out of me. Lyrica makes my head feel funny but does not relieve the nerve pain at all. And Gabapentin the generic for Neurontin, I can’t take either. Something different for I took the name brand and did okay but had the weight gain too. Effexor is another one that does not like me! It causes more numbness and tingling. And that drives me nuts. I am going through a medication problem too right now trying to get on the right regimin.

Welcome to the forum. I am a newby in posting. I was diag. April 2007. I was not completely paralyzed so the ventilation part of the process I can’t help with. Thank God!
I admire you for standing by your brother. That is the most important thing you can do for him right now. I remember when I was hospitalized (for 1 mo. total) having my family with me and supporting me made all the difference in the world.
If Andy is as strong as you say he is, he will get through this. I’m no saying it is going to be easy, but with the family support he has is most helpful.

Since I have been posting and venting some of my feelings so many others have helped so we are here for you and Andy. One thing I keep hearing that I have found to be so true is GBS stands for “GETTING BETTER SLOWLY”.

GBS does not go away as rapidly as it comes. So stay with Andy and stay strong and he will progress from your strength.:)

As far as the not sleeping. I had a rough time sleeping because of the severe pain and muscle spasms. They gave me Ambien and it did help some. I wonder if it is his anxiety level that is keeping him awake. He could be afraid to go to sleep for fear he won’t wake up (just a thought). Do they have him on any antianxiety meds. I am still taking xanax day.

Well better go, keep in touch
Cathy:)

Hi! If this happens again and she gets bad off again, she made need further evaluation. Keep a journal also! Perhaps a Rhuematologist can answer her weakness and fatigue if she falls into the same situation again. No nerve damage is a good sign. But Fibromyalgia can be dibilitating and also be a disease very hard to diagnose. Which is something she might have. It normally shows no nerve damage but the symptoms can mimic a Neurological problem when in fact it might not be a Neurological problem. Chronic fatigue syndrome is another disease that can have strange problems. Might not even be GBS or CIDP but mimics it! I too have Fibromyalgia and that is how I started but I have the CIDP too! I wish your wife well and hope the B-12 was the issue and nothing else! May she get well soon!

Hi! I am too rather new and have the CIDP instead of the Gillian Barre Syndrome. I really don’t know much about this disease but only a few things. But other’s in here will be around to help. Just want to welcome you here and the only advice I can give you is to Love your Brother and let him know just how much you care about him.
The others in here will be able to give you more info! I am so sorry to hear about your brother. That must have been horrible having that happen to him. Something as simple as a sore throat to turn out being life threatening is really scary! I will keep your brother in my prayers and hope he gets well soon!

I also would like to say welcome. I looked up Gas City, Indiana because I did not know where it is and apparently we live about 70 miles apart. In addition to welcome, I would like to let you know about a support group run as part of the Neuropathy Association in Indianapolis on the north side, if you were to be interested. It meets almost every third Monday of the month from 6:30 to 8 pm. There is a neurologist that runs it–Dr Frazer. It is really more of an educational session and discussion than what most people think of as a support group. (No one has really talked about emotions!!, which may make the guys glad!) Anyway, it is really informative. People have all kinds of reasons for neuropathy. I am the only GBS/CIDPer, but we all have a lot of the same issues. It is a new group; we have only meet three times. It is open to anyone interested and adult family members are welcome to come as well. The next meetings are August 18 and Sept 15. I hope you might be able to come.
WithHope

Hello! I am new here and on the mend from GBS. It started in January. I am 29 with a husband and 2 boys, ages at the time were 6 months and 2.5.
I cried my eyes out every single day, so I can understand how your wife feels. As for me, the crying was so bad, the drs. made me see a psychologist and started me on more anti depressants.
I received IVIg in the hospital and now receive it at home (have been home since April). A nurse comes once a month to administer it. Its A 3 day process. My neuro ordered this.
As for questions for the neuro, I would ask for an EMG. I would also ask about getting her into an outpatient rehab. If she does have GBS/CIDP, she needs the rehab. I hope I helped a little.

Greetings
I sent you a private message with my thoughts – hope that they are helpful.

I have to say that I agree in general that telling is better than not, but you have to be comfortable.

Take care

Debs

moat-atom hope its right

Hi Brittianey my name is Brenda and I was diagnosed with gbs oct 12 2007 and it was upgraded to CIDP on may 5 2008, I understand about the getting sick again I have been told by my doctor that I will have a relapse at some time and it scares me to death but as like you I went into hospital and then lost all my body functions was tracked and in icu was lost 3 times and when I left the hospital on Jan 14 2008 was able to walk and talk again its been the fight of my life but you cant be scared because it is a gift that you have recieved and live life to the fullest and take everyday as that, you well get better and the pain well stop and the nightmares are your bodys way of remembering the trauma you went through but you made it and life is GOOD so keep dancing and laugh the best is yet to come

😮 I became a member to this back in Oct. 2007. That was the first day I returned to work after getting GBS in May of 2007. I still have residuals, I guess, less severe than others maybe but still annoying. My facial muscles still aren’t how they used to be. It’s a little strange but, I can’t really smile like I used to. I can’t kiss, whistle or drink from a straw using my lips. Saying words that have the letter “b”, “m” and “p” are a little difficult to the point I have to slow down my normally fast talk when it comes to these. When I try to smile it looks like I’m in pain– LOL. My legs and arms aren’t bad. My legs below my knees are slightly numb- I’m more ticklish on my feet than I ever was- pedicures are a complete mental feat to try to get through without laughing and squirming uncontrollably.There’s no pain, physically. But I guess I shouldn’t complain, right? Nice to meet everyone!

How are you this day?

[SIZE=”3″][/SIZE]Yes, you are going to beat this. What movement do you have?
Thank heavens for computers and this forum as it is very helpful to one and all.
will be thinking of you.

THinking and praying for you this day.

[QUOTE=cyn926]First, I want to thank everyone for your suggestions and welcome. It is so nice to talk about this without people giving you that sympathy/confused look.

Second, you mean I’m not really crazy? You have all heard of this type of thing and maybe actually experienced it? Wow, I can’t tell you what a relief that is, I’ve been so isolated with it for so long, I’d about given up hope ever finding people who understood. Before they diagnosed my cervical herniations, I thought I was heading right back to where I had been. My hope was the surgery would fix everything, but all it did was fix my neck lol. The rest is obviously not related. I still think my spine took such a big hit from that paralysis I had, my discs running amock just seem like it’s part of the package.

They have checked my thyroid on and off, and it seems to be fine, though it is something to think about keeping an eye on. I’d never considered diabetes, though my sister had it, I probably should.

Other than the pain, I’m greatly concerned about my limbs falling asleep as they do. This isn’t just here and there, it’s anytime I try to lie on my side, either side…it’s also accompanied by the pain, be it in my legs or my arms and hands. You can imagine, then, how rare a good nights sleep is. Having to wake up and reawaken a dead limb takes awhile, by the time that happens, I can’t go back to sleep. Usually, I just toss and turn which stops the complete numbness, but sometimes it gets too far gone. I thought the leg thing was Restless Leg Syndrome, but with my muscles rippling like they do, and the pain that’s involved, I doubt that’s it.

And with the cold, my hands pain, well I would rather have the herniated discs than deal with that…it’s just brutal, a deep ache that won’t subside and you want to just scream, it’s that intense.

For awhile, I assumed it was Chronic Fatigue, but the paralysis with my mono just doesn’t cover that. Mono isn’t supposed to paralyze. If my ex husband says something is bad, you know it is…and this scared the heck out of him. Oh, one thing I didn’t mention was my vision was affected for quite some time, especially at night when I’d see doubles. My ex had to stop me from driving after dark for several years. For some (this is going to sound strange) reason when I was on a rather high dose of tranquilizers for the muscle spasms, my vision corrected itself. Doctor couldn’t figure it out either.

I now live in Western Michigan, about 50 miles north of Grand Rapids. Any referrals you can suggest would be awesome, though I don’t have the best insurance.

So, my question on the nerve tests is how do they even know what nerves to check? And what would the blood tests indicated? This time I am bringing a close friend to the doctors with me so he can confirm this is a real problem, maybe someone else that has seen it will get the doctor moving. I also have to get some pain management resolved, they yelled at me when I was eatin Tylenol like crazy, but don’t want to give you narcotics. I’ve never gotten “high” on them in my life, they just take away the pain to some extent. Some pain goes through no matter what, but it’s always relieved. We tried some prescription anti-inflammatories, but I had bleeding in my stomach from that; and steroids, but that made me so jittery I nearly hit the roof.

Sorry I’m so chatty, just hoping you guys can relate to some of the stuff I’m talking about and not think I’m just a baby or exaggerating. Do you deal with the “falling asleep” and RLS? One thing I do know, is there is some damage to my spinal cord from the herniation, and I have hyper reflexes, rather than the slower one people with post-GBS have. Tap my knee and it kicks straight out…even baffled the neurosurgeon.

Thank you all again, and any help you can give will be much appreciated. I will give the doc the list of tests…he’s usually pretty good if I tell him to test for something, he just gives up if nothing shows up. Again, thank you, and have a wonderful holiday weekend![/QUOTE]

Hi-
I was reading your post. You mentioned you are in constant pain and need pain managment. I have cidp. I do not suffer from nerve pain that people with cidp/gbs get. I do however suffer from constant back pain because of the curvature in my spine. I had my spine fused when I was 15,could not get as straight as everyone thought because my doctor had to “go in blind”-the electrodes did not work. Anyways so because I still have a curvature and suffer from pain my orthopedic surgeon at the university of michigan refered me to the pain managment clinic there. I take ultracet for my pain. It some what works,I think I need a stronger dose. My doctor does not want me to up it-however when I see him in 2 weeks I will find out. Just wanted to let you know about ultracet,it may be easier to convince a doctor to give you this and could help with your pain. Ultracet is an a-typical opiod it has 37.5mg of tramadol(the pain killer part)and 325mg advil. Anyways it may be easier to get because it is not currently scheuled and so therefore is not a narcotic,so doctors do not have to worry about the dea..lol You may need to bring this up to doctors and if they tell you it is a narcotic,tell them to look it up on the offical dea site. Some people for some reason in the medical profession seem to think it is a narcotic..Anyways sorry to go on and on. I hope you can get your pain under control:)

Let me know if it works….. I’ll try anything xoxoxoxox Roxie

Hi! I read your thread. Yes indeed you have some symptoms exactly what I had when I had GBS at 18 years of age. I am 40 now working as a RN case manager. When I had my GBS, it started with my eye(ptosis) then face, can’t smile, can’t blink, cant close my jaw then it went down to my respiratory muscles, can’t breath (vented for one month), then to my legs. From time to time I think that I am lucky to recover with few residuals such as my muscle atrophy on my fingers and my absent deep tendon reflexes. Few weeks ago(August 2007) I had flu-like syndrome which is unsual because it’s a summer flu like syndrome. During that week I had new onset of electric shock feeling on both of my legs and linear problem. I felt like my home was sinking and tilting. I still have those electric shock feeling on my legs as of today but with less intensity. I saw my neurologist and all he said is just the basic nursing care which I am fully aware about. I felt that I was just wasting my time to see my neurologist. I am not quite sure if there is anyone out there post GBS who had a flu like syndrome and experience linear problem and electric shock on both legs. I am not sure if I am developing a new onset of CIDP.

I’m new member too so you are not along. I’m in the stockton area:confused:

Hi Deb, Had same surgery 5 years ago, It was a very easy simple procedure. One night in hospital, no pain cant see scar peace of cake, sending you good thoughts. Fear not………..Gene

My son is also 16 and he was diagnosed 2 years ago.

It is so hard just being a teenager even without dealing with this.

My son deals pretty well for awhile and then he just “breaks”. He gets really mad about it sometimes.

How does your son handle it?

Just wanted to let you know that the only thing that helps me with my residuals that are very similar to yours is by taking 1 mg of klonopin, 1-3 times a day. Without it, i don’t think I could stand the stiffness. I also take cymbalta because the Lyrica didn’t work for me. Doctors don’t often like to prescribe klonopin but I have been on it since the beginning of my GBS in 2000. If I try to come off of it I am like the tin man . Maybe you could convince your doc to at least give you a trial run of it. xoxoxoxo Roxie

Hi Kim glad to Hello.How is your Son? I hope Coping
Kind Regards
Paul

Hello All You Hot People….

It is a whole new meaning, isn’t it?!!! Good to read this post….we have long
winters in Minnesota and cool Springs, so when it begins to get humid and the
heat goes up, I too wilt. I find the days just go by and I am in some kind of fog. AC or not, the fog settles in.

Those neck ties you are talking about are at [url]www.QVC.com[/url] and called
Misty Mate Artic Cool Ties…good luck!!

Nice to be good company on hot foggy summer days.

Blessings Maureen Boz

Hey guys. Summer is a killer for me. That used to be my favorite time of year but now it seems like as soon as it hit’s 70 I can’t hardly breath and it just wipes me out. I hate it. I used to hate winter but now I can tolerate it better. I love the ocean and I hope if I ever have a chance to go back that I will be able to handle it. I think the breeze from the ocean will help me survive the heat. I know I don’t feel temperatures like other people do anymore but hot to them is like on fire to me…yuk.

sherry

The heat affects me anormously.Same thing happens. I get very weak, winded and extremely fatigue, I perspire like a Sring rain. I keep my house very cold at all times, includung winter. Needless to say my friends don’t get it. They don’t like visiting much because of the coolness. I wish it was 65 with a cool breeze year round. I think my residuals would really improve. Thanks for posting. xoxoxoxoox Roxie

I to am new. My onset was similar to yours 3/06. I hope you find the info and people as helpful in dealing with the many issue that seem to always come up as I have. The info that I have gainned in just the short time I have been visiting this site has been more than I was able to get from numerous docs and books over the course of the last year. No one seems to know as much as those who have been there!

My 29 yr old son Nate has Axonal damage which is also know as AMSAN. After I read about it, I flat out asked his neurologist if he had that and he said yes.
It just means that the damage is much more than just the nerve coating but rather the nerve itself is damaged.
It means that the healing process will take longer than if just the coating was damaged. The nerves either heal or they grow new roots to by pass the damage. Its slow but it can happen completely.
Nate is 14 mos out and has gotten back his chest muscles, back muscles, arms and some of his hip and upper leg muscles back.
His lower legs and feet muscles are still not there yet and they’re still numb a lot.
His doc told us he would be ok anywhere from 6 mos to 2 yrs or longer. Everyone heals at a different rate.
Nate’s blood pressure was out the roof when he first got sick but it got better with the meds they gave him and he no longer needed meds for that after 3 mos.
One thing that is hopeful though is that GBS doesn’t affect your moms brain or mind. Even if she has facial paralysis, she knows pretty much what is going on and talking to her to tell her what his going on is a good thing.
It will help her to know.
When Nate was first really sick, I would tell him what I read and reassure him that he would get better. It really helped him a lot.
Trudy, Natesmom

I have been addicted to IVIG for awhile now. When I first started it was done in a 4 hr window, and for 3 days. By the 3rd day I would start having headaches and high blood pressure. One day I had an allergic reaction to it, on the first day, first hour. Then it was changed to 8hrs. I couldn’t tell any difference, after 3 days I was still very sick. I changed Neuro’s last year, and now I get it 1 day every 2 weeks, over 4 hours… what a difference. I get a slight headache sometimes, not often, and no more problems with high blood pressure. The Hospital stay can be a real drag, hang in there. Hopefully if you continue getting it, you will be able to get it at home. I promise you, if you don’t lock the door, the nurse will infuse you in an hour and be gone. If I get it faster than 4 hours, the headaches start. Even at that, once in a while, I feel like I’m getting short of breath, and it goes away when they slow it. On 2 occasions my heart stopped, but I was in the ICU and it was a brand I hadn’t used before, because the hospital couldn’t get what I had been using. Plus I was really, really weak.
I know the signs now if I’m starting to have a reaction.
I feel like I can’t get a good breath, My ears start burning, and or my butt starts itching. go figure.
It takes awhile to get it figured out. So my guess is they figure they got ya for 24 hours, why hurry, the slower the better in most cases. Get ya an ipod and lose yourself in the music…or you can get some books on tape. I get mine from the library. Hang tough, you are not alone. Angels abound.

peace

kevin

Hang in there Teresa

I was diagnosed after four days of goin to drs because of the severe pain in my hands and feet 11/5 /o5. was in hospital an rehab 2 & 1/2 months. my hands and feet still hurt I am currantly taking neurontinm and lyrika. most of the time it is bearable except when I overdo it.
My hands and feet are still numb. gratitude has got me through this whole experience. My 81 year old husband is my caregiver. HE’S GREAT1

Hi,

A more interesting fact would be how many do you know who have GBS in your town, family, area. Since I have had GBS two years ago, I have found out about a little girl in my town who had it about the same time I did, an older gentleman in the next town, another lady in my town who had it 20 years ago, my 2nd cousin who lives in PA, I was also visited in the hospital by a woman who had GBS who live in the next town. That is five plus myself. What about you folks? Pretty unusual for a rare disease.

Caroline

Congrats. Keep the morale high. Slowly he will definitely get better.

My case is also somewhat similar. I had too facial paralysis but I recovered due to elec. Stimulations. Now-a-days If I stand still for more than 5 minutes, the numbness starts in thighs. Both hands also get tired when I do some heavy work.

What he has to do, just to take rest in between and keep positive thinking.

My Fiance started his GBS journey just this summer. Luckily it ended up to be fairly mild, (only traveled to his thighs) and he’s now walking with a cane. We live down in Laveen (west end of south mountain).

I have yet to talk to people from the valley who have it. I work at Phx Children’s, and even here most people don’t know what it is. 🙂

Amy

Hi,

I was in ICU two weeks. I was totally paralyzed but not vented. I could talk but the right side of my face was paralyzed. Rest is important, especially in ICU. I was not receiving therapy but just taken care of in ICU. I started receiving therapy once I was in long term care at another hospital. I did get a little range of motion from a PT when I was moved out of ICU. The key is not rushing therapy. I remember one of my doctors telling me that doing too much too soon before you are ready can cause GBS to flare up. I saw an OT once I was was in long-term care which was about 3 weeks after my onset. I found wearing hand grips and feet boots were very helpful. My hands curled terribly so I had my grips on all day and night. The hand grips were on several hours and off about one hour. I wore my feet boots at night mostly and on and off during the day. You are very tired when you have GBS. OT did basic things first. I also had a speech therapist. It takes time just to move and progress. I remember thinking it was hard work and would I ever be able to dress myself again. I loved my OT’s and PT’s. I hated the therapy because it was a lot of work. I never thought I would be able to dress myself. It was work. The goal they told me was to make me self-sufficient. Do not do anything for the patient but have patience as you wait and work with him. Encourage but don’t discourage. Positive words. Invoke confidence in the patient that they can do it and you won’t be far away if they need you, especially when you begin to leave them alone to do things you know they can do but they think they can’t like dressing and eating.
Glad you want to help GBS patients!

Caroline

hai..sam………i am 38 years old and 79kgs,5’7″ height…..iwas diagnised for gbs on 5th of june’06 at that time i was give IVIG for 5 days and when i came out my weight was redused from 78 to73 kgs as i was only on liquid diet may be. i was also not able to stand at that time, i was taken home were i was treated by a PT daily for one month and gained back my original weight because of the regular diet. I was able to walk with awalker after three days of my PT course and was able to walk with support of two persons the next day and was on my own after a week. The only thing i realise at that time was the will power which makes us to do all the things and the goo diet and the PT of course…………. so pls dont bother about when to start walking…….first take goos diet……have PT………have ur confidence level high.which motivates and give ur sis themost moral support of ur family and friends…………byeee and i pray for ur sis to recove soonnnnn.

Sridhar.

Hi, Jen is almost 11 now and doing well. I’m fighting thru CIDP right now. Just hoping it gets better soon.

How is everyone else?

Greg

It’s so good to see you made it back here. You and your cats were in my thoughts because I love animals! I wanted to email and let you know about forum, but couldn’t.

Hello everyone!!! It’s nice to see so many familiar names again. I hope I can catch up with everyone.

Greg

Hello,
I can relate to some of what you said. I am semi-dependent on a wheelchair now (I’ve gotten stronger) and the one who I thought would stick by me no matter what, just disappeared when I could no longer do what we used to do. Now, the one who I thought would not be there, has shown she’s my best friend.