I’m a rookie here, but was dx GBS in March 2005 and spent 3 mos in hospital. To me residuals are the fact that I still don’t have all the feeling in both feet and my right hand has both motor and sensory damage. If he was fine for 2 years, it could be the start of something else. Don’t ignore the symptoms and if you think you should get it checked out, then go sooner than later.

Best of all good luck, document everything and then question it!

hi shan & welcome,

it could be his resduals or perhaps not. it couldn’t hurt to go to the neuro & have an ncv done when compared to one done earlier, these last 4 weeks i’ve been worring abt my self in a similar manner. i can hardly walk unassisted, things fall ouy of my hands, an this double vision doesn’t help the typing. i’ll be seeing my neuro next week. take care. be well.

gene gbs 8-99
in numbers there is strength

Gene you Take Care of Yourself.
We all love you and know how much help you give to all of us. Let us be there for you.

Sue

Yes, Gene-take care of yourself and let us know how you are doing. SKelly-residuals are pesky little things and can crop up at any time, often when we have overdone things. Has your husband done a lot more than usual or gotten tried or stressed lately? If so it is likely it is residuals. It never hurts to have a visit to the neurologist, though, and if it were me I would be calling to make an appointment. My money is on residuals but why take a chance. Good luck, Jeff

Gene,
I am praying for you tonight.
Dawn

Oh Gene, I am sorry to hear this. You will be in my prayers also.
Shari, I agree with the others. See the neuro. If he says it is nothing, that will be an answer to prayer. Best wishes.
Mary Ann

Sounds like resids to me Lori. I have alot of those numb patches all over, I miss my mouth when I’m eating something and discover yet another numb spot. My tongue and lips go in and out all the time-ya gotta laugh at the weirdness:D I agree pets are the Best therapy one can get. My Henry (momma’s boy) is credited with my arm strength return(what little there is anyway) from throwing his ball everyday. They just brighten the day when their tails wag:)

Hi, I’m glad to hear you are seeing some improvement. Just Monday I had a bout of the dizzies, of all places – in the shower. My gums still haven’t lost the tingling sensation. And host of other ailments too long to list. As Cheryl said, you gotta laugh otherwise I’d be crying all day. Wishing all of us better days!

Oh those nasty residuals! You are not alone, Lori. They can pop-up any time, any place. I am post 13yrs. and right now am experiencing more pain residuals than usual. I just returned from a 2 week trip to see my grandboys in Portland, ME and I haven’t had acupuncture in 5 weeks!

About the face ~ the other day when I received a kiss from HB I jumped back with pain on and over the top lip. It was a “shock”:eek: I never know when it will be painful and not just pleasurable 🙁 And those heart palpatations . . .

Remember this: test results are only as good as the original test. Science has not advanced enough to catch all those “little things” we feel and know are there. Listen to your body! I’m sure that Gene would tell you to rest more ~ whatever that means for you 😀

[SIZE=”3″]Congratulations on the new puppy 🙂 [/SIZE]

I too still have patches in my face. They definitely get worse when I am tired.

There must be a nerve or something between the eye and the mouth because I can’t wink with my left eye without making my mouth go really funny looking! 😮

My blood pressure was borderline high before GBS but then with GBS it went High and is still high. I am still hoping that will come back down so I can get off meds for it.

Take care!

I wish I had had your post last week. My new Doc. doesn’t get it. The shortness of breath, heart palpatations…the way you described your current risiduals was exactly why he suggested all this blood work and a stress test.
I tend to run a low blood pressure anyway.
Results showed the heart is okay…so I ask why am I feeling this? At least he was honest and suggested I find a neurologist. I wasn’t particularly happy with the one that was thrown at me in ‘o4 when I was diagnosed GBS.
I know what you mean about scaring yourself whenever these sensations pop up.
Hang in there, good to hear you are feeling much better.
Pets are definitely theraputic. Our 2 Chocolate Labs have to do their running without me…but just watching them enjoy life makes me smile.

Hi: I don’t have any numbness but can relate to the shortness of breath. There are times when I scare myself and my wife because just climbing up the stairs leaves me panting, while other times I have no such symptoms. My heart is good and I never had this before GBS so I thinks it might be a residual. Jeff

I have this dam numbness in my face, somtimes when im tierd I feel like I have been with the dentist, and it gets hard to talk for the tounge get also numb. I have not have any heart problem, exsept it have been to low when i working out, but I think that is getting little better. But dizzeness is coming ofter, and that scears me. I thank for walls for usaly I have some near by when Im just like fallen.

sharon,

IL Barry Arnason, MD Univ of Chicago Chicago, Il 773-702-6386

treated at Alexian Brothers in Elk Grove Village during his recent stay in the CCU with GBS. His neurologist is Dr. Andrew Gordon with Northwest Neurology. They have offices in Hoffman Estates, Barrington and Arlington Heights. The number is 847-882-6604 His other neurologist is Dr. Kuhlman. He and Dr. Gordon are partners, and he’s the most wonderful doctor I’ve ever met. He can be reached at the same number as Dr. Gordon.

take care. be well.
gene gbs 8-99
in numbers there is strength

This whole GBS and CIPD is bringing me down. From what I’m expericencing and reading we are plagued with a disability once this all affects our bodies and depresses our minds. Don’t like being a cripple, dealing with all the drugs for neuropathy, fatigue, and sleeplessness. Can’t believe that something like this can be so devistating. How is one supposed to work under these conditions? I’m only 46 and my work performance is suffering. Need that damn job and it’s insurance. We don’t have a dissability program. I think I’d have to quite my job, file then wait while I lose my house and dignity. Where is my winning lottery?

Looking forward to April 15 to meet some of you. Sorry to be such a downer, but this sucks.
Peace,
Dex

Dexter,

Hold fast. This disease does suck, there is no doubt about it. I was 29 when it hit me. I was a mom with four little kids and no disability either so I can appreciate your frustrations. All I can tell you is the healing takes time and it is different for all of us. I initially went home and was told I was 100% but I wasn’t. I pushed when I could and rested when I needed to. Over time I was able to get back to some semblance of a normal life. I have chosen to move on and never let this disease get me down…but I know that is hard.

Please know there are people here who will be there for you in one way or another to get you through this rough patch. I live in Canada so our social programs are different but here I would see a counsellor to determine if there were any types of programs to help financially until I could get back to work. Is that an option in the USA? Perhaps there is someone here who has been in a similar situation to you that could give you some feedback.

Take care and take time to heal. i am thinking of you and praying you find a solution soon.

Dexter,

Hold fast. This disease does suck, there is no doubt about it. I was 29 when it hit me. I was a mom with four little kids and no disability either so I can appreciate your frustrations. All I can tell you is the healing takes time and it is different for all of us. I initially went home and was told I was 100% but I wasn’t. I pushed when I could and rested when I needed to. Over time I was able to get back to some semblance of a normal life. I have chosen to move on and never let this disease get me down…but I know that is hard.

Please know there are people here who will be there for you in one way or another to get you through this rough patch. I live in Canada so our social programs are different but here I would see a counsellor to determine if there were any types of programs to help financially until I could get back to work. Is that an option in the USA? Perhaps there is someone here who has been in a similar situation to you that could give you some feedback.

Take care and take time to heal. I am thinking of you and praying you find a solution soon.

If you have palpitations and shortness of breath, I would recommend looking some information about dysautonomia. Do you also ever get light-headed when you stand up? If so, then this is a tell-tale sign of dys, though you can still have dysautonomia without that particular symptom.

I have a form called POTS as a result of GBS, which causes tachycardia, palpitations, and shortness of breath (among other things). I have lived with this since GBS a year ago, but was only diagnosed with POTS by a cardiologist in January of this year. I went on heart meds (beta-blockers) for it and saw improvement right away. The effects of POTS were really debilitating before, and now my life is much closer to normal because the meds help SO much.

Once my neurologist learned about the POTS, he was like, “Of course! Why didn’t I think of that?” and then proceeded to tell me that many GBS patients end up with some form of dysautonomia because of the nature of the lasting impact of GBS on your autonomic nervous system. But he also said most people do not get diagnosed because they chalk up their symptoms to residuals and never explore it further. So people don’t get help because they don’t think there’s anything they can do, but that’s not the case.

If you look at the list of POTS symptoms, you’ll understand what I’m talking about. How many of these symptoms are on our list of residuals? It’s all about the autonomic nervous system:

[url]http://www.supportdysautonomia.org/whatisdys.html[/url]

[url]http://www.dinet.org/symptoms.htm[/url]

There’s not a lot they can do to “cure” dysautonomia (once you’ve got it, you’ve got it), but as I’ve discovered, there are medications that can really help. The beta-blocker has helpes with some of my residual numbness in hands and feet as well, which must have been the result of blood pooling and faulty circulation as a result of the POTS, not just a “residual” of GBS.

I would recommend talking to your neurologist about the palpitations and shortness of breath and then asking him/her for a referral to a trusted cardiologist who might have some familiarity with GBS/neurological conditions, or at least who your neuro might be willing to communicate with in advance. A lot of doctors don’t know much about dysautonomia (much like they don’t know a lot about GBS), but if you find a good one, they can really help a lot.

[url]http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm[/url]
[GBS is mentioned as a cause on this page]

[url]http://www.dinet.org/what_causes_pots.htm[/url]
[Note that GBS is listed as a cause under “Autoimmune Diseases”]

[url]http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm[/url]

This may have nothing to do with what you’re experiencing, but the symptoms you mentioned along with the change in your blood pressure make me think this may be worth exploring. If there’s a possibility your symptoms could be alleviated with a simple medication like a beta-blocker, then why not investigate a little further?

I hope this has been helpful! Good luck!

ETA: Dizziness and nausea are both common dysautonomia symptoms, and they don’t have to appear at the same time as heart/breathing symptoms. I have gone through periods of severe nausea and dizziness related to POTS symptoms that didn’t necessecarily coincide with when my heart/breathing was more messed up. All of these symptoms have lessened with the beta-blocker meds, though, which apparently blocks the chemical rushes that cause us to have these things. So it could definitely be autonomic for you.

Janet,
I feel like such a wus when I read what some of you went/go through. Things are just tough here at work and home, while I seem find on outward appearances, mentally and physically I’m not. Still can’t believe that before I got GBS I never heard of it. I just want my old self back, be able to walk long distances, do stairs without holding on for dear life. Wondering too if I should continue with the IVIG. It helped early on but the last few treatments didn’t seem to do much. I hear pros and cons about Canada/US systems, so far I’m covered here as long as I’m employed.

Suzanne, the info on POTS is great? I’m experiencing all of them. Printed it out and will present it to my doc next week.

Thanks for all the support and advice. It’s a weekend so its rest time.
Peace,
Dex

Dex,

You are not a wus..you are grieving what you have lost. That is a normal response to trauma. What you are feeling is a normal response to an abnormal event. At some point, you will find the strength (physically and emotionally) to live the best life you can. The reality is that I will never be that person I was before GBS, but what I have chosen is to be a better person and to learn from my experiences. I have chosen to get on with living. I have been very fortunate to have made a very remarkable recovery, and it is only now that I am beginning to have trouble as I experience residuals. I can appreciate where you are coming from because on the outside I look healthy and I cover really well, but on the inside, I am suffering physically and mentally. That is why I have chosen to come back here to the forums to talk to people who I know can appreciate where I am coming from. Please know we are all here for you, we understand your frustrations and your pain. Please pm or email me and we can keep in touch. I find comfort in knowing someone understands. I hope you can find the same.

Take care…I will keep you in my thoughts and prayers.

Hi,

I too have the occasional numb spot on my face. I have experienced the fear of wondering what was going on, but like many of you, kept on keeping on. I have a 1 yr old and a 4 yr old and can’t let it stop me. Slow me some, sure, make me take a nap or go to bed early, yes, but stop me never!

Hi PKS,
My son has cidp, not gbs, but I can tell you from reading on this forum for 18 months, some have residuals for a while after. It takes some people a couple of years to heal. Otheres get a bout of residuals ten years later. Others, like you are so very lucky. If you look at all of the members on this site, I bet there are thousands, but only some come to this site, myself included when there are problems. What I am trying to say is MANY must recover like yourself, because they are not on asking questions, just registered. I am very happy for you and wish you continued progress. One thing that is ALWAYS expressed by GBS members on this site is REST,Rest, and more rest. If you over do it, you may become symptomatic. Everyone on the site reccommends REST if this happens. Good luck with the continued progress and I hope you do not have to visit much (I mean that in a good way, of course we would love to hear from new members and help whenever they need it)
Sincerely,
Dawn Kevies mom

TITLE: Residual Problems Following Recovery from Guillain-Barre¢ Syndrome: Do Depression and Anxiety Play a Part?

Interesting conclusion: Therefore, our results do not support the hypothesis that GBS sufferers with residual problems are generally depressed.

See the article just cut and past the following link:
[url]http://www.hicsocial.org/Social2003Proceedings/Cecilia%20Bourke.pdf[/url]

I still feel everything I left the hospital with nearly four years ago. My feet are a mess, feel like clubs that are constantly asleep, very uncomfortable. Need a cane when out of the house, which isn’t very often. The tight band around my rib cage is most uncomfortable and the pain gets unbearable at times. It hasn’t changed since completion on my initial PP. When I wake in the mornings my whole body tingles so much it’s uncomfortable. My face and hands are the worst and it’s hard to hang onto things until it lessens after less than an hour. I tire very quickly and exercise is out of the question. My Dr. has me seeing heart specialists this week for a stress test among other things. It’s great to hear about those who recover. I can’t imagine how that must feel. I’m still on 5400 Nuerontin and now 200 Lamictal and Vicodin. Sure wish I could recover from something.

I think that at this stage of your recovery you shouldnt worry or wonder about residuals if they arent bothering you at the moment. HOWEVER, I still feel you would fit the recovery phase of GBS MF as you are only a few months out, so there is another reason not to stress about residuals. If at some point you feel that residuals have become part of your life, worry about them then. The common saying “if it aint broke, dont fix it” is true, and stressing about something that isnt a problem now, or may never be, isnt worth your peace of mind and ongoing recovery.

Yes, there are people who dont have residuals, or have minimal residuals. One thing you have to remember is that you are probably seeing some of the worst case scenario’s here on the forum, as it is normally those who are having trouble with something that come to the forums for help and answers. [B]All GBS and the different varients ARE accute[/B] (otherwise they would not be given the name GBS or Miller Fisher), and having residuals does not mean it is not accute as [B]residuals are not a continuation[/B] of the attack. If the nerves, for instance, were damaged (axonal varient), and were not able to heal completely, one would probably get fatigue, possible pain and weakness for the reset of your life – so there is some left over ‘problem’ from the illness. That, simplistically put, is what residuals would be. (Wash a glass with soap, but some soap is left once it has been rinsed – that would leave residual soap).

There is literature on residuals, however a great deal of research has not been done on it – but a few case studies have been documented.

I had GBS 25 years ago and had very little residuals as a result. I had a few minor problems but they never stopped me from enjoying life, working and raising a family of four kids. As I age, I am now beginning to experience residuals and they are a concern but I tell myself I have had 25 years of relatively good health in relation to what I am reading here. I feel blessed in so many ways and what ever this disease throws my way now, I will deal with. I think the thing we all need to remember, and I hear this here in all the posts, is that we have suffered a major assault on our nervous systems. How could we possibly expect there to be no residuals? Any major illness is going to change your body make up etc. so I am determined to use what I learn here to be as healthy as I can and take care of myself as best I can. My job also gives me an opportunity to share my experiences throughout North America and I intend to keep sharing for as long as I can as my goal is to ensure others receive the best possible care in all walks of life.

Be well, and take good care. God does not give us any more than we can handle!!!

I had GBS 25 years ago and had very little residuals as a result. I had a few minor problems but they never stopped me from enjoying life, working and raising a family of four kids. As I age, I am now beginning to experience residuals and they are a concern but I tell myself I have had 25 years of relatively good health in relation to what I am reading here. I feel blessed in so many ways and what ever this disease throws my way now, I will deal with. I think the thing we all need to remember, and I hear this here in all the posts, is that we have suffered a major assault on our nervous systems. How could we possibly expect there to be no residuals? Any major illness is going to change your body make up etc. so I am determined to use what I learn here to be as healthy as I can and take care of myself as best I can. My job also gives me an opportunity to share my experiences throughout North America and I intend to keep sharing for as long as I can as my goal is to ensure others receive the best possible care in all walks of life.

Be well, and take good care. God does not give us any more than we can handle!!!

Janet