Hello I am new to the group and would like to get information from anyone that may have recurring symptoms.I started with original symptoms in late October 2013. Left leg weakness, left arm weakness, tremors of both hands, sever cramping of left leg,along with burning feeling in both legs and badder issues. This progressed into my right leg becoming weak. I also had a change in my taste senses and had sensory issues with my feet. This lead to on and off foot drop depending on weakness. This continued until early February when I began to recover. I continued with recovery to the point I began to run again and work out in gym. Then in late June I began to feel cramping in my legs and the burning started also. Several days past then I woke one morning to complete left side weakness from my face to my foot. We contacted my Dr and after exam same stated it could be original nerve and muscle damage flaring up or could be a recurrence. I am 17 days in to this second episode waiting for test results. My own research has found that some patients do suffer from recurrent GBS.Has any else had this or have any info on recurring symptoms.Thank you
From what you wrote, I do remember the severe leg cramps. However, that happened early on while I was in the hospital. I do not believe I have had recurrent GBS. However, I sometimes get so tired, I can hardly walk into my bedroom. Also, I do not have much strength in my hands or legs. This could be old age - since I am 69 years old. However, I am on the go a LOT - so I would generally say I recovered completely from the GBS I had in 1988. I wish a quick and full recovery for you. I understand only about 5% have problems years later with their GB. Nebretta
Hope you are feeling better Jim!! Your timeline overlaps ours ( my husband is the patient) but curious if your Dr visit was a neurologist? You do sound like you are dong well, but just wondering about your protein levels? Such an odd syndrome !! Think all are different and wish you the best!!
I was told that GBS is not recurrent but it does take years to recover and tiredness can often exacerbate symptoms again. I agree with Mary, every time I have a concern I contact my daughters neurologist immediately . Thinking of you.
Could be a form of CIPD.
Worried mum said:
I was told that GBS is not recurrent but it does take years to recover and tiredness can often exacerbate symptoms again. I agree with Mary, every time I have a concern I contact my daughters neurologist immediately . Thinking of you.
Jim,
I would get a neurologist who is experienced with GBS and a variant called CIDP. Don't worry about hurting your doctor's feelings. Keep us posted.
Molly
Thank you to all that have replied
Hi there. I haven't had the weakness flare back up but I still tire very easily. I don't let it stop me tho. I work 2 jobs 6 days a week and am on the go all the time. If I don't force myself to stay busy, I will be laying around all day. I have severe burning all over my body. It started in my feet, and now has made its way up in my face and into my mouth. It's horrible. I finally get to see a neurologist soon as I haven't had insurance all these years and now I do. Lyrica helps, but hopefully a neurologist can do more for me.
Thank you for your reply, I hope you discover the cause of the burning. Since my post my doctor now thinks I may be suffering from CIPD. I am taking a wait and see approach.
lisarocks66 said:
Hi there. I haven’t had the weakness flare back up but I still tire very easily. I don’t let it stop me tho. I work 2 jobs 6 days a week and am on the go all the time. If I don’t force myself to stay busy, I will be laying around all day. I have severe burning all over my body. It started in my feet, and now has made its way up in my face and into my mouth. It’s horrible. I finally get to see a neurologist soon as I haven’t had insurance all these years and now I do. Lyrica helps, but hopefully a neurologist can do more for me.
Hi Jim,
Your post prompted me to join this group! I was at the ER all day yesterday with my son for a sudden onset of paralysis in his foot, trying to figure out this same thing. My son had a really severe case of GBS a year and a half ago. He had just turned 18 and was in very good physical condition, but ended up on complete life support followed by months of rehab. He got a nerve conduction study about a year ago that indicated some minor diminished nerve function in his lower legs and feet, but he was completely pain free and it did not interfere with his life in any way, so we hoped he would not have to worry about GBS anymore. No problems until yesterday. The foot issue came as a complete surprise.
He was thoroughly examined by a full complement of neurologists yesterday. They said that the nervous system is never really the same after GBS, and former patients can easily aggravate a specific nerve group without even realizing they hurt themselves. Because the paralysis is only on one side and a small area right now, they believe he probably injured the perineal (sp?) nerve on the outside of his knee, causing this sudden case of foot drop. However, they cannot be sure, so they told him to take it easy for a couple of days and see if it gets better.
If the paralysis spreads, they said it could be a recurrence of full blown GBS. If his foot gets better, this could be a one time thing due to the nerve injury or it could be the beginning of "chronic recurrent GBS." I think you were asking about the latter, so at least some doctors do believe it exists. They said some patients develop recurrent bouts of GBS that are typically less severe than the first round, but they do not know enough about that to predict an onset or prevent one. We just have to wait it out and see what happens. Either way, I thought I had read everything about GBS, so I was really surprised to learn that he could experience temporary bouts of paralysis -- especially once he seemed completely recovered.
Hang in there. The bad news for anyone who has had GBS is the possibility that you have not seen the last of it. Good news is that this could be a temporary problem that completely resolves without treatment.
I am still early on in my recovery. My major symptoms all hit early Feb. The normal numbness and tingling of hands and feet. Then the right side of my face went numb. Then all symptoms seemed to go away over a week. Fast forward a month I thought I was in the clear. Then at work I noticed it was getting harder to me to walk. Got home and all the first symptoms I had came back on my right side. All the way up to my face. I thought I was in trouble. By the next day it was starting to feel better. That was Thursday night. Today is Monday. I just feel tired and sore.