I wanted to welcome you to the site. Stay strong at heart and the physical stregnth will not be far behind.
Dawn Kevies mom

Hi Daniel, Welcome to The Family. Feel free to ask any questions you have or just vent when you need to. Rest is the Best thing to do when not doing therapy. Take Care.

Hello Daniel,

Glad you found us! I know what you mean when you describe the fatigue, I describe it as almost pain (but its not), I think your description is good.

There is a new book out called : Guillain-Barre Syndrome From Diagnosis to Recovery by: Gareth Parry and Joel Steinberg.
If you are considering buying it, check to see if it is at your local library first, or go to the bookstore and flick through it to see if it the kind of book you may be interested in.

hi daniel & welcome,

amitriptiline for sleep & it helps gbs. fatigue is normal. it is your body telling you you are tired & need rest/sleep. rest lying down as much as possible. it is the fastest road to recovery as slo as it may seem. take care. be well.

gene gbs 8-99
in numbers there is strength

I surely wish we could have met under other cirumstances, but, believe that others here have been on a similar path as you are on now.
At my own onset, that ‘fatigue thing’ was overwhelming! The falling asleep in a middle of a sentence, then waking up ten minutes later was the most peculiar part of it all. The next step was finding the pain medications and treatments that can work for you best.
You really HAVE come a long way, progress-wise. You might not believe it, nor ‘feel’ it, but, if read other peoples’ stories in older posts, you will find that you are not alone at all.
I recall my first few months after being hospitalized and then home alone as ‘expeditions’ – those of going to the bathroom, getting dressed, or ‘trekking’ to the kitchen to get either food or water. Each effort took an extraordinary long time at first, but keep at it, with that time and practice it does get easier! I went from wheelchair, to walker, to cane. I can now walk and drive for short periods of time. I have been through several ’rounds’ of physical therapy and have learned that ‘pacing’ yourself is key to more progress. As you say so well: there are moments that tell me ‘enough’! So true-you have to learn your limits and try to expand on them slowly…a snails’ pace compared to most of life. But, the nerves that cause our problems die very quickly…many of them, millions of miles of them, essentially. Nerves re-grow though very slowly…like about 1/4″ each a month.
That your legs are recovering more slowly only means that they were ‘hit’ harder. It sounds as if you were very lucky to get diagnosed promptly, and it’s up to you to learn and keep at it. It does get discouraging at times, truly does! But people here are good and can help you get over the bad spots and enjoy sharing the good ones.
Please don’t be afraid or shy to ask any question at all. There is no question that is ever to silly or basic with dealing with this stuff. My good thoughts are with you always.

hi angee & welcome,

the loss of feeling in your fingers is normal. with time it will go away. the chance of getting another gbs attack is around 3%. if you know what caused your initial attack, i’d say that is what you want to stay away from. if you over do it [ie. too much physical activity] you may feel like you are getting another attack, but you are not. plenty of rest lying down is what is needed. take care. be well.

gene gbs 8-99
in numbers there is strength

last I heard there was no known reason for why people get gbs.. my doctors knew like nothing so we had to get all our info through research. The chances you’ll relapse are about the same as the chances you would get it in the first place BUT i read that if u get it when you are a kid/teen you are more likely to have a relapse and that any surgery including a minor one it can trigger a relapse. (btw I dont know exactly how accurate that information is, I just read it in my research at the library).

[QUOTE=grinzndgigglez]Thank you for replying. I believe they said that what caused it was Epstein Bar Virus. Isn’t that just a sore throat that goes around a lot? Or am I mistaken? I am always paranoid now to be around sick people. And without support from my family, they think that it’s all in my head. Maybe it is. But now I know to make sure to do my best in staying away from people with sore throats. Is there anyone in this foundation located in maryland?

<333 Angee[/QUOTE]

If epstein barr was what caused your GBS, I would suggest avoid exposing yourself to people with mononucleiosis, as that is caused by the E-B virus.

Did you have any vaccinations in the weeks that preceeded your GBS? Some doctors don’t make the connection.

hi. My son had tingling fingers and toes. Now he is on Nerontin and only his right hand middle finger goes numb. ????? I am like you. I feel like my family is alone in this. (until i found this website). Good luck to you.

Stacy

Angee,
I had GBS in 1999,recovered and went back to work.I had to have 2 operations in 2003,and they think they triggered my CIDP.I had to have the surgeries to correct vascular problems…Take good care and stay positive!

I wonder what criteria the neurologist used to say that you are “completely recovered”?? You know your body’s symptoms better than anyone else. You may not know “what they mean” but you do know that you have them!!

Keep asking us questions, search the threads with words for your symptoms and keep researching. Many of us have printed out the info to take to our docs. Dr. Gareth Parry & Dr. Joel Steinberg have written an excellent book (Guillain-Barre’ Syndrome) printed by American Academy of Neurology. It was just released and I found my copy at Amazon. It’s very in depth and speaks to how much we still don’t know. They readily admit that much is being learned from the patients themselves. Most doctors only know about this disease by page 373.42 in their text books. I’ve studied my son’s textbook and it is seriously lacking 😮

You may not have a doc or therapist that knows about this disease [I]but[/I] if they are willing to listen and learn with you then you’ll be ahead of most of us. Good luck 🙂

PS ~ GBS ~ getting better [I]slowly![/I]

angee,

the medical community’s definition of completely healed would make a layperson laugh. if you can do your ADLs [activites of daily living], you are 100%. you should take neurontin PRN [as you need it] for the pain. took 3 hours for it to take effect on me. you should be aware of your body & train yourself not to do the things it doesn’t like, but no need for worry. rest a whole lot more. it’ll help now & in a faster recovery. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi!
You are not alone. I had GBS in August 2006. My doctor said I was recovered in Sept!!!! I still have “burning cold” feelings that come and go in my lower legs, and pain in my ankles and legs. I also have some mild buzzing sensations when I am tired. I wonder if it will ever be completely better.

[QUOTE=grinzndgigglez][B][I][COLOR=”Red”]I notice alot since my DX of GBS (may06- almost a year) that in weather changes and climate changes my legs, arms, fingers all go really numb and tingly really quickly.[/COLOR][/I][/B][/QUOTE]

Hi there,

We learned from my husband’s neurologist that temperature can greatly affect the residuals of GBS. Nerve signals run slower in the heat, and if there is any disruption left in the myelin they are slower yet and cause more symptoms.

My husband was considered fully recovered also. No one told us about residuals. It seems to be VERY common among GBS patients. Don’t worry. It will get better… one day at a time.

I am new to this too. My son is 20 and got gbs in basic training and really dont know allot about this . He was really lucky that they figured out what he had. It is nice to know that there is other people you can talk too. I hope to show him this place as soon as he getts home in May.