Hi Carolyn! Bless your heart! I think it might be best to call your doctor and let him know what is going on. He might have to increase your dosages or change the treatment plans for you!
I hope you get better soon and hate to hear that you are feeling badly! If you feel like this is getting really bad, then I would go to the ER if you can’t get in touch with your doctor. But I would try my doctor first and see what he thinks would be best. You can’t reach him, then the next step would be getting into the ER. Just hope you can reach him! Good luck Carolyn!

Amy:

Sorry to hear about what you are going thru… I hope you don’t sell your recovery short… Have you had afo’s before this relapse? And don’t they have any treatment plan for you? Hope others can be of more help… Remember there is always hope.. Don’t give up! deanop

Amy I wrote you a post but don’t see it here. A lot of us go through depression and /or PTSD following our illness. There is a lot of stuff to deal with, things we lost and things we won’t do again. I am glad you are seeing someone that you can talk to about this and of course we are here too. We have all walked in your shoes to some degree so can empathize and support as you need us.

Please don’t be afraid to vent here. We have all become like family and we do what we can to help each other through the rough spots. Ask us questions, yell if you want.

Sending you warm wishes….

Amy,
Hang in there honey. I know this is NOT what you wanted to hear. Janet is so right we are here for you. Please come & just vent if you need to, yell, scream, throw a fit. I love to throw fits. Just ask my husband. I have feel sorry for Cathy days at least several times a month, but thats okay.
We are all here for you.
You are in my prayers & I wish the best for you!

Hey Amy, hang in there! I sure can understand you getting head therapy (cute description). I feel like I could benefit from some also. I’m a year out this past June and the great folks here have been dealing with it for years, don’t know about that… I know there is hope. Let’s keep the faith together!
Check out John’s thread “2 year anniversary” jwggraham Very uplifting.

what are afos’s?
thnx, alice

Ankle-foot orthosis (abbreviated: AFO) is a brace, usually plastic, worn on the lower leg and foot to support the ankle, hold the foot and ankle in the correct position, and correct foot drop. Also known as a foot-drop brace. From Wikipedia

thanks smiley 🙂

JoJo

I hope that the head stuff works for you….it takes abit of courage to admit that we need help with this stuff, particularly after the “acute” bit is over. People expect that we will just get on with recovering, no worries.

It is funny how we forget that our bodies are not individual bits and pieces, that we are one holistic system. Our mind controls such a huge amount of stuff.

I got to a point a couple of years ago where I could not cope with the pain and the disability and the effects of CIDP on my life. I was dealing every day with anxiety that was disabling in itself. I had been going off and on to see a therapist that dealt with people with terminal and chronic disease. She was great, but I finally admitted to myself that I needed more help.

So – all I can say is go for it. Don’t feel guilty or bad for needing it. It is probably one of the best things you can do for yourself.

PS – We need to vent just like everybody else! Hold a “Pity Party” from time to time, just make sure you are the only invited guest and everyone else is not around!

Cheers – and we are all here for you – we do understand and support you.

Debs

JoJo-I know this forum has been the best head therapy for me-you can vent, ask questions, help others by giving answers and the best part of all, you are never alone. We are all here for you. Never give up…..Emma

Hi Amy! I would have posted sooner but have been feeling poorly the past two days. Yesterday I was walking around not feeling a leg. Thought I was going to fall several times and had to get the walker out. Stayed in a chair most of the day.
I know how you are feeling. I saw a remission of 3 years dealing with Systemic Lupus and Neuropathy and then after getting run over by a SUV things went down hill and I suffered for two years. Then had the surgery on my spine thinking after the surgery everything was going to go back to normal. But ended up getting an attack on my nervous system and been struggling ever since.
And next week is going to be another battle. Not knowing my future. I know how you are feeling and the let down is the hardest thing to do. This site has helped me cope so much better in understanding what is going on with me with CIDP.
We all get depressed from having this and we all want to be normal again. But sometimes that is just not possible. I always try to say to myself that there is someone far worse off then me. And that helps give me strength.
Seeing someone is a good thing and getting some help may bring you stronger in fighting your battles with this nasty disease.
I will keep you in my prayers and hope that you outsmart those doctors and go into remission again. There is one thing that can never be taken away from us! Hope! As long as we keep Hope then maybe that Hope will someday come true!
You can come here anytime and vent all you want! That is what we are here for! To be by your side and help you feel better! A big huge cyber hugs coming your way from all of us! Hugs

hi kls & welcome,

sounds like your body is getting more than it can take. could be residuals acting up rather than a real attack. give in to the sleep. try sleeping/resting big time for a month & see what happens. if otherwise get an emg/ncv. neurontin for pain. take care. be well.

FL Mayo Clinic in Jacksonville.

dr stephen block 1411 No Flagler Dr, W Palm beach

University of Miami, School of Medicine, Department of Neurology. Dr. Bradley[He’s the Chief Neurologist, teaches medical students, writes medical text and periodicals, and is heavy into ALS research] , if not then on of his associates Dr. Mauricio Concha with Neurological Associates in Sarasota. he is moving [locally?]… later by another, I was on a heart monitor and close to a respirator. I have nothing but wonderful things to say about Dr. Concha!! Last I heard, he was in Sarasota, FL

Manley Kilgore – Baptist Hospital in Jacksonivlle 904-396-2400. Rehab doc Howard Weiss 904-296-9939. He is also a resident at Brooks Rehab Hospital. They treat every GBS patient in Jax and he is also very willing to help.

If Tallahassee is not too far of a trip for you might want to get in touch with the Tallahassee Neurological Clinic at (850)878-8121. They have done wonders with me

Tampa try Dr. Steven Sergy or one of his assoc. 813-872- 1548 has a great reputation with GBS/Miller Fisher – he practiced in Boston – he has been nomiated as President of the Nero for the USA so you might have to take one of his Assoc.

tampa Dr. Chichicova and she has experience with GBS phone #974-2201

gene gbs 8-99
in numbers there is strength

KLS,

Welcome. I had gbs at age 18/19, my life has been pretty healthy and I had put GBS behind me forever …. or so I thought. Over the past 2 years or so, I have slowly become more and more fatigued, to the point where I too at times can barely get out of bed. Pain over my body has become more accute and weakness sets in at times. Long story short, the neuro told me that once you had GBS and had ‘recovered’ you were fine. I thought I was going mad until I found this site! I am taking a small portion of an article called [B][FONT=Arial]Disability After “Recovery” From GBS[/FONT][/B] by : [I]Kleopas A. Kleopa, M.D., Neuromuscular Fellow [/I]
[I]Mark J. Brown, M.D., Professor [/I]
[I]Department of Neurology, University of Pennsylvania [/I]
[I]School of Medicine, Philadelphia, PA[/I]
[quote]

[I][B]Delayed progression[/B] [/I]
[I]Weakness from GBS reaches its maximum during the first two or three weeks of the disease. This is the active or acute phase of the illness. After a plateau period of days or weeks, recovery begins, lasting between weeks and two years. During this time strength improves steadily. Strength and sensory function plateau after about two years. [B]However, many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS. The same phenomenon has been observed after poliomyelitis (“post-polio syndrome”) and other forms of acute nerve injury.[/B] The incidence of slowly progressive late weakness in GBS is unknown, but it is rare. When it does occur, the patient’s physician must recognize that the new weakness of seemingly recovered muscles does not necessarily indicate a second attack of GBS. [/I]
[/quote]

The full article can be found on [URL=”http://www.angelfire.com/home/gbs/aftergbs.html”]http://www.angelfire.com/home/gbs/aftergbs.html[/URL] (just copy and paste). There are quite a few of us who seem to suffer the above decades after our initial attack. Having said that, this does not mean you are having a relapse as such. However it is important to note that GBS has a relatively fast onset, somewhere between 2 – 4 weeks of getting to its worst point.

I am learing to live with ‘it’ now and do take a few meds, much to my disgust 😉 to try and help me cope.

I hope that in some way this answers a few questions.

Hi KL

Did you spot where Gene mentioned Neurontin for pain? I have been reading here for a few years now and Neurontin seems to be ‘it’ as regards the pain. Ordinary painkillers won’t touch it.

Just a small note – I had GBS 13 years ago, and have had the occasional ‘totally fatigued, fall down or lie down scenario,’ but over the last 2 weeks it happened twice, rather big time for me as well, and it scared me a little. The oddest thing though is that I also got a couple of sneezing fits – and sneezing is not the norm for me. Quite possibly, it is an allergen or simply the change in the weather. I just thought it a coincidence that it happened to you also. Especially as I am in Southern Ireland.

As regards your job – it’s not weird at all, not really. You want to do the job so you go to work, but at present lack the energy, so you want to stay in bed. I think that is logical. I want to go to work yet I do not like getting out of bed.

I don’t think that you are ‘blabbing on’ – you should see my posts when I get going! If you couldn’t talk here, it would be a sad do.

Teresa

KL,

You’ve got to stop overdoing it or you may find yourself in pretty rough shape. You remind me of my fiance, Ben, with GBS. He just keeps going and going, and all of a sudden, he’s down for the count. (In fact, he’s been in bed sick all day today.) You’re both the same age too.

If you feel like you need a day or two off work, then take them. I’ve met nearly 100 people who’ve had GBS at some point in their lives, and you can’t tell most of them are sick or in pain either. It doesn’t matter what the outside world sees; it’s how you feel inside.

To answer one of your questions, yes, GBS can become CIDP, but there’s also a form of GBS called chronic GBS, which is probably more what you would have if this is, in fact, a relapse. Please make time for yourself, KL. I almost lost Ben to GBS because he was too manly to go to the doctor when he became ill. If he hadn’t finally gone after four days of crawling around the house in pain and paralysis, he would have died on the bathroom floor in my arms.

Shannon

KL,
To put yourself at ease as far as a relapse or possibly CIDP, have an EMG/NCV. This will determine nerve demyelination.

Like you, I had GBS many years ago, 26 in fact, and I have had no problems with residuals, that I thought about at least, until last year. My problems started in my arms and then moved to my feet and legs. Lots of pain, cramps, and then the pins and needles tingling.

I took Cymbalta, with good results for about 10 months, but it “helped” me regain the 60 lbs. I had lost the year prior. I asked to be taken off. Pain is back and the tingling never left.

I sleep SOOOOO much more now than I did before. 10-12 hours a night with a nap in the day. And I am still tired. I do notice that in the beginning of the day, pain is less and so is tingling. More I do, more pain, more tingling.

I have a script for Neurontin and I keep telling myself that it will get better if I rest more and then I won’t need it. I’m like Ali, hate meds….

But like gene says, get more rest and see how you feel. I bet it will make a difference.

Good Luck and remember we are here to support you and hold you UP!

KL,

I’m concerned about your approach to being sick. You say that you can’t afford to be sick, but when your body stops working, you won’t have a choice.

I was like you before I got GBS – stubborn, and would push myself beyond reasonable limits, instead of stopping when my body was tired or sick. Although for years I was able to force my body to do whatever I wanted, I believe I have paid a big price for that. Please don’t do that to yourself, it’s not worth it.

One GOOD thing GBS did for me was to teach me how to listen to my own body. Now, when I need to rest, I rest. When I need to sleep, I sleep. When I’m sick, I get help. I hate taking medicine, but when I need it, I take it. As a result, my health is improving, and my quality of life is better.

Please reconsider whether you can afford good medical care. Lower your cost of living, take a loan, ask you parents for help, or whatever it takes to protect your health. Without it, other things mean very little.

Best wishes,

Suzanne

Hi KL. Looks like you are one of those people who can’t really believe it when they are in pain. Your legs fall from underneath you and you are still thinking: this can’t be happening. You are a tough guy, but please listen to the people on this forum, because even if you think you can get up after your fall and just get on with things, you can’t go on like this. Your body is giving off alarm signals right now, and if you don’t listen to them you will do damage to it. I speak from experience. See it like this: taking action by slowing down is the only way you can take your life in your own hands. Take care.

[QUOTE=KLScoville]I was curious….when I was 6 months old I was diagnosed with GBS. I ended up being temperarily paralyzed in my right leg. Lasted for about 4 months according to my mother. Now I am 38 and boy am I having some problems. Lately being sick and my legs are killing me. Like I have Restless leg syndrome. They ache when I stand, sit, walk, work, drive, etc. My toes fall asleep and go numb constantly. Somedays my legs don’t work right. Won’t pick up when I go to step up or over something. I am always tired too! There are days that the only way my legs feel better is when I am finally sound asleep. I have had blood work done and everything is normal according to my doctor. My bloodwork was done this past summer. I live in Florida and in my opinion the doctors around here are only out to get paid, don’t really care about the patient. Should I just tough it out and look for a doctor around here that maybe can help me and spend money that I don’t have while I search or what? My mom thinks that maybe GBS is coming back but I guess that I am in denial about that. Whatever is going on it is a slow and painful process. I am not even close to being disabled but it is getting hard for me to work (I am an electrician). I have to keep moving. A few years ago I use to be active but now I would rather sleep then anything. And I keep having a sneezing fit on weekends, must be allergic to something but my doctor doesn’t want to do all these expensive tests to find out what. He kindof talked me out of that. I hope someone can help me or give me some kind of advice on what to do. I really don’t have alot of money nor time to spend on not going to work. I do have medical insurance with a very high deductable that I will never meet. Help please!!! :([/QUOTE]

I am not sure were you live – I live in Tampa – but I had MF variant of GBS in 3/06 and Tampa General Hospital and St. Joseph’s are very familar with it (they are both state sub) My nero Dr. works for University of South FL would you like her phone #? or feel free to email me at [email]sasmaw@tampabay.rr.com[/email]
Sally

[QUOTE=KLScoville]I was curious….when I was 6 months old I was diagnosed with GBS. I ended up being temperarily paralyzed in my right leg. Lasted for about 4 months according to my mother. Now I am 38 and boy am I having some problems. Lately being sick and my legs are killing me. Like I have Restless leg syndrome. They ache when I stand, sit, walk, work, drive, etc. My toes fall asleep and go numb constantly. Somedays my legs don’t work right. Won’t pick up when I go to step up or over something. I am always tired too! There are days that the only way my legs feel better is when I am finally sound asleep. I have had blood work done and everything is normal according to my doctor. My bloodwork was done this past summer. I live in Florida and in my opinion the doctors around here are only out to get paid, don’t really care about the patient. Should I just tough it out and look for a doctor around here that maybe can help me and spend money that I don’t have while I search or what? My mom thinks that maybe GBS is coming back but I guess that I am in denial about that. Whatever is going on it is a slow and painful process. I am not even close to being disabled but it is getting hard for me to work (I am an electrician). I have to keep moving. A few years ago I use to be active but now I would rather sleep then anything. And I keep having a sneezing fit on weekends, must be allergic to something but my doctor doesn’t want to do all these expensive tests to find out what. He kindof talked me out of that. I hope someone can help me or give me some kind of advice on what to do. I really don’t have alot of money nor time to spend on not going to work. I do have medical insurance with a very high deductable that I will never meet. Help please!!! :([/QUOTE]

i used to live in naples, and i am also a cronic pain patient. if i paid that 650 a month deductable i would have about $200 to live on. those doctors are only down there in that hell of a state to make money off the old and rich. my advice is go north my friend. iv’e had my gbs for a year now from the waist down and it really sucks. talk to you soon, chedd-r

Hi Kelly, So you are not a tough guy but a tough gal! So far for me being a liberated person, assuming straight away an electrician must be a man.:o
Hard, isn’t it, making all these decisions about your health and figuring out who you should be listening to. I face the same difficulties. It is a good idea to contact one of the doctors that are recommended to you. I wish you luck!

As a 32-year post GBS’r I’ve learned the hard way to pace myself, take shortcuts in daily activities of living, get help, and to use water, yoga, and massage as a way around the pain, cramps, throbbing and numbness you describe. Resting intermittently during use of my muscles really makes a difference. Learning to pay attention to ergonomics, does too. The MS Society has produced an adaptive yoga tape (routine), by Eric Small, in Los Angeles. I recommend his therapy because you support the weight of limbs with pillows while moving through full range of motion exercises that are gentle enough to be therapudic but not too stressful to cause more pain, weakness, or cramping. Feldenkrais tapes will help learn where individual muscles in muscle groups reaches it’s peak without pushing it over the top into a pain cycle. Best wishes.

KLS,

I had a relapse scare a few years ago. Tingling and increasing weakness just like GBS. A neurologist did an EMG and a few other tests and pronounced I was just getting old [at 40?]. Normal aging. I could only get upstairs by pulling myself on the railing, foot drop was back, ankle-turning, arghh! A few weeks before I was carrying my son to bed up those stairs. My doctor told me that my vitamin B levels were at the bottom of the ‘normal’ range and that perhaps I should try a B complex. That did the trick. After a few weeks the tingling was gone and my strength returned. Now, I take B-100 complex daily. It is the only supplement I don’t let myself run out of. Stress kills vitamin B, which can bring on GBS-like symptoms, which causes stress…pop those B’s.