Have question-please answer asap if you know

I was diagnosed back in Aug. 2013, I am currently having my feet jumping and twitching and my legs from knees to my feet feeling numb. I have had some jerking in my arms and hands, I was wondering if anyone else has been experiencing this and could it be a relapse? Could I PLEASE get some feedback from someone!!

Hi I would suggest you to see your Neurologist, it may be related to GBS or it could be something else. I was also diagnosed in August 2013 and have had some residual effects like painful legs at night and hand tremors but no numbness, so no I have not experienced what you are going through. My Neuro always asks if I am experiencing any numbness when I go for check ups so I presume it may be of concern. I hope you get help soon. God bless.

Hi Deborah,

How long ago was your recovery and how far did your GBS go? I had this immediately after recovery for along time and still 30 years on get this now and then but if you are worried then ask your Doctor. It takes a long time for the nerves to repair and you will get your body sending mixed messages to your brain. Hope this helps. Mike


Hi Deborah, I have had CIDP since 2003 and was a GBS Foundation liaison from 2003 until 2015. If there is ever any question by all means call your Neuro. However I used to have that same problem all the time, your Myelin coating on your nerves is still repairing as is any nerve damage. So the electric shocks are probably just because the nerves are firing and the insulation is missing, causing shocks. The other possibility is that you just did too much and your body is telling you so. If your take Neurontin/Gabapentin or Lyrica/Pregablin, an extra one might help. Hope this helps.

Thank you all for your comments, will post what we find out later when we know.

Hi Deborah, I was diagnosed in August of 2012. The numbness from my knees to the toes has not gone away. My Neuro stated that it could take from 2 to 5 years for this to go away. And yes, I have had some twitches in my legs along with leg cramps. But overall, it is slowly getting better and as I turn 69 years of age I do believe that the numbness will eventually go away. Keep believing it will get better.

I I still have ,like many gbs after effects numbness hands and feet up to calves plus finger tips almost 5yrs now Bob Martin.


Please share my story also read Focus Magazine Feb,issue P.16,17, on line author Alan Cassels thank you so much Bob GBS Survivor

I was diagnosed April 16, 1999 and still have tingling in my fingertips and toes. My doctor told me not to worry because that means that my nerves are growing back.

Just received the news I’ve had a relapse. Once again I’m going through the effects of GBS. :(!!

Sorry. I still can't walk unaided after two years and have severe left sided weakness. I feel things will never get better. Are there others still as severe as me? I hope you recover . god bless x

GBS has left me paralyzed from the neck down 2004. I don't believe the symptoms you feel are a relapse because I've had them come and go several times over the last 10 years. Actually, they get worse, then improve a little bit then get worse and again improve a little bit. Unfortunately, the worse it is a little stronger than the improvement so over time I notice more numbness and increased neuropathy (tingling and pain).

95% of people with GBS do not experience my level of paralysis for as long a period of time. Those that I know of with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) have experienced a recurrence after 10 years with 99% recovery within 6 months.
I still believe I have AIDP which my doctors described as acute rather than chronic. That may be wishful thinking on my part but what the heck, I don't think I can get any worse.

My philosophy has been; fight the big war and don't worry about the small battles. I let God take care of those.
Keep smiling

Hi:; I too have burning feet : my feet feels like it’s glued : tingling and small shocks keep coming : it’s 19 months now : if I walk my feet Justs goes on a war with me :: my back hurts if I stand for long : but I’m still very hopeful all will be well soon one day ; keep smiling and be strong :