Which advice would you give to someone who has just been diagnosed with Guillain-Barre Syndrome?

I would explain to the patient that most people recover from the illness and end up being able to walk again, however that the timeframe for each person is different.Also that recovery depends on the rate at which the myelin sheaths are restored, as well as receiving physiotherapy from the early stages.The patient must however not over exert themselves as this does not speed up recovery. I would explain to them the overall picture of the illness and the recovery phase, so that they have better understanding of how long it takes. They will need to think about how to manage their work situation as well.

4/26/17 by AM 1211

Time is on your side. Stay positive. I was so against learning how to be handicapped. Once I gave in and realized I could use the wheelchair, walker, bath equipment, braces, ramps, to make myself stronger my attitude changed.

4/26/17 by james ventura 1501

It gets better, it takes time, you just need to hang in there and push yourself forward, you will improve. Since my Guillain-Barre I have run several marathons and competed in several Olympic distance triathlons and I cycled throughout Europe, so have positive outlook and do not think you can not do it, just try doing what you want to do.

4/27/17 by Totta 1181

get the most professional help and keep yourself moving foreward with what ever you are able to do safely. Do not give up and be positive, no matter what is said about your recovery no one knows what your out come will be.Do not accept negative information a correct, keep strong and move forwARD IT CAN BE A LONG SLOW PROCESS.

5/9/17 by Bob 1650

Seek immediate medical treatment. IVIg trwatment once it is confirmed gbs case

9/3/17 by James 2825

Hang in there you will come out on the other side of this debilatating disease. Temporary not forever!

9/9/17 by Barb 1100

Positive attitude and support is needed since it may take a while to get better if at all once you leave the hospital. You will have ups and downs but realize you have come a long way already.

9/9/17 by Joe 200

To be patient listen to your Dr and remember it takes a long time to get through this journey.

9/10/17 by Connie 2000

Try not to fall into , why me ! Educate yourself and seek out others who have it . There are many ways to move forward and keep positive about the illness . Your not alone by far .

9/10/17 by Rex McKinley 1200

Never give up, exercise and rest when body says to.

9/10/17 by Debra 2000

In my opinion, I'm unaware of any magic pill or physical therapy or diet or nutritional supplement that will quickly repair the damage typically done by GBS. If you are young, and / or if you have a very mild case, and / or you were exceptionally healthy, you may be back to near-normal in a few months, but I think that is the rare exception. I've read of some running marathons or doing other incredible physical feats within a year of onset. For the worst-case survivor (2-5% don't survive), ascending paralysis reached the point of compromising the respiratory system, you were intubated, & your hospitalization & recovery may be quite lengthy, some never escaping a wheelchair, never getting well. The 80% of us that neither have spectacular recovery or lifelong severe handicaps will gradually recover our ability to walk unaided, recover much (but not all) of our previous strength, balance,& stamina. Unfortunately, our peripheral nervous system was damaged, & unless fully healed, our sensitivity to touch & temperature in our extremities is lost or partially recovered. Neuropathy (nerve pain) may be a debilitating lifelong consequence. At least near-term, you may expect to cope with the presence of pain for which there's no basis: my feet hurt for no reason, I haven't done anything to hurt them, but they hurt severely just the same. The pain may not be present early in the recovery process, just numbness. But as the nervous system heals, it may inexplicably wake up by signalling pain. You'll receive medication for "nerve pain", which may have limited to no benefit, or side effects worse than problem they are intended to address. Many of the medications may leave you dopey, drowsy, unable to think or function clearly. Operating dangerous machinery like an automobile is a great risk. In my experience, you must develop the patience to allow time to provide your body the healing necessary for you to notice an improvement. A noticeable improvement in sensitivity to sharp vs dull pin pricks in previously numb areas is so positive an event, it's the signal that you're healing. Time heals. Find whatever strength you need from your faith, from family & friends, from support groups, from whatever source is necessary to help you cope with the time-commitment necessary for your body to heal. Then take joy from each improvement in sensitivity, balance, strength, stamina. Keep & maintain as positive attitude as possible. Accept your new normal, then take as much joy in each improvement until you are well. Some will (or seem to) plateau short of reaching fully well. Count your blessings. Dwelling on the "why me", or on "I-coulda-shoulda done this or that instead" will just open a new wound daily that never heals. You've got GBS? OK, deal with it, & expect to get better, if not fully well, over time. Distractions from my new reality, like reading books was very therapeutic in passing time constructively.

9/11/17 by Denny 2300

Find the best Neurologist you can find and trust their judgement.

10/1/17 by John 2070

Rest as much as possible and educate yourself about the illness Join support groups where you can make contact with others travelling the same road

10/28/17 by Kath Donaldson 2065

Don’t think that your life is over. It’s NOT. It’s going to be different, for sure. But you can do this. You need to find something or someone that gives you strength and push through this!

9/8/19 by Tara32473 2570

The advice I would share is that with effort most of us can get back to where we were before GBS. I didn’t give up and made it back to work and still work til this day. Although I suffer in pain each day, I did get back most of my life and others can too. Stay positive.

9/9/19 by Joe Wojtanowski 2500

You can recover completely from GBS, I did since 2017 and I have been back to work full time and resumed full active tennis playing for upto 3hrs at a time. There is a special supplement in the market formulated in Switzerland by a Swiss lab that speeds your full recovery. Put your contact info so I can contact you or anyone interested personally. I am self employed and do physical work daily 6days a week. Hope that helps anyone interested to get better very quickly.

5/16/21 by Onjorika@yahoo.com 100

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That do not lower the arms, that place of desire and strength, you can get out and leave

4/27/17 by Adriana. Translated

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Well, I have been given. That recovers the life with the will and strength that faith can do everything and that one must cling to the love of the family in these moments

4/27/17 by Carolina. Translated

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To do rehabilitation and that do not take tranquilizers

4/27/17 by Analia. Translated

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Do not order the hope and required to if same

9/10/17 by Marta. Translated

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Have faith in God q everything is back to normal, do physical therapy !

9/14/17 by RARIANA. Translated

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It is long, but that one comes out. That the disease is reversible.

10/19/17 by Nicolas. Translated