November 3, 2009 at 1:26 pm #8441
I went to my neuro last week and found that I had lost both reflexes in my ankles, both knees and my right elbow. He sent me to a neuromuscular guy who tried the reflex thing with the same results. He then hooked me up to the nerve conductor and told me everything was fine. Has anybody had their reflexes’ after onset, only to loose them again? I’m not sure what to do.November 3, 2009 at 5:48 pm #87152
Yes, I’ve lost my reflexes as well, as a result of the GBS/MFS. Maybe not completely, but decreased in some areas, gone in others. My neuro told me it’s nothing to worry about, that the reflexes are are not useful but for diagnostic purposes. I wouldn’t worry.November 5, 2009 at 10:34 am #87181
Mine are gone as well, knees, ankles, and elbows. I can run slow and lift weights though.
JaymesNovember 5, 2009 at 3:34 pm #87183
Yes!! I can remember about 2 years ago going to my dr. and no reflex’s in
both legs or ankles. Haven’t had them since. Ms. Judy
Don’t worry-be happy (I am) IVIg treatments working well.:)November 7, 2009 at 12:20 am #87214
My reflexes have been pretty much absent for the past 2 years due to the GBS. When this first happened, I noticed no knee-jerk reflexes, and that has continued ever since. Ankles and feet have been very poor for reflexes. All my joints are very unspontaneous now.
But, on the bright side, this week I actually noticed that while I was walking downtown to do my errands, at times my footsteps were NOT landing flat and heavy on the ground. They were actually rolling from heel to toe once in a while, the way a person normally walks. I was so amazed at that; it was like a surreal experience! As soon as I had gone a few more blocks though, the plodding footsteps returned; I am very limited in strength now, easily exhausted. But those few moments of improvement were so wonderful!!!November 7, 2009 at 9:28 am #87219
I don’t have any reflexes either. I can walk slowly without a cane, but my feet still drop a lot. Doen’t appear that the reflexes coincide with any stage of development.
D.U. Congratulations on the walking. Even a momentary success is a tremendous source of joy for us.
DianeNovember 26, 2009 at 9:16 am #87593
I haven’t had reflexes anywhere since GBS almost 13 years ago. I believe they affect my balance or lack of balance I should say. Foot drop is starting and I am starting to fall in all sorts of ways. A nurse friend said they make shoes with AFOs built in. I will find out more about this!November 26, 2009 at 10:10 am #87598
Most of the people are replying that they lost reflexes from the beginning or delayed from the beginning. My understanding is that you lost reflexes, regained them, and now have lost them again. From looking at your other posts, you had GBS in 2005 and regained function and recently were found to have lost reflexes again (but not in left elbow?). Reflexes are indiactions of nerve conduction in the body. We have them so that we can react as quickly as possible it we need to–so that if we are hit/hurt on the right leg we pull back faster than would happen if the pain signal had to go to the brain and us think about (even briefly) to move away. With reflexes the signal goes to the spinal cord and back. Reflexes are used to indicate if something is a problem in the peripheral nervous system (outside of the brain and spinal cord) or in the central nervous system.
The fact that you have lost reflexes again indicates that something is happening in your nerve conduction again. If you are not having symptoms other than the loss of reflexes, do not worry about it too much, BUT do listen to your body. EMGs/NCV testing is not as good a test really of the total nerve function as body function is and a lot of people have GBS and slowly are noted to lose reflexes. This means that there may be something new happening in you. It may not ever be more than loss of reflexes, but it is different.
WithHope for a cure of these diseasesDecember 27, 2009 at 2:49 pm #88350
lost my reflex when I was onset, 2006 and not gain theim again.December 27, 2009 at 8:52 pm #88361
I too lost my reflexes and my neuro told me not to worry about it. He said they will probably not return. Last exam there was a slight reaction in the one knee…..nothing outstanding for being over 4 years now. I am still struggling in my own way but have great reflexes when I knock something off the shelf or someone throws something at me, I can catch things quickly! I still drop things but catch them and I am very happy about that! People toss things to me and others gasp! I catch them and everyone relaxes! I use that to my benefit and start things now because I can dish it out and now I can take it too! LOL My strenght is always getting better and my wrists were the last big improvement. I still struggle with the walking distances but I can get by without a can but feel more comfortable not having it! Big test was this December when hubby had brain tumor removed and I let him use my cane! Boy did I miss it! But we got by! All the stress from his illness caught up to me after the surgery. I crashed but am slowly returning to my new normal over the holidays! Speaking of the holidays! Happy Holidays Everyone! Take care and I am looking forward to 2010!January 28, 2010 at 2:12 pm #89179
My reflexes disappeared in 1954 after my first bout with GBS. I have gotten on well without them since.February 1, 2010 at 11:53 am #89326
My neuro said that the only thing these reflexes were good for was to kick your leg when hit on the knee with a rubber hammer!
However – 6 years after my first go-round with GBS – I had a young female Dr. say that she DID get reflexes on me. She said that it was very faint and very deep but with her hand on my knee she felt them. She was, as I said, young and female. Perhaps her ability to “feel” was more sensitive?February 4, 2010 at 7:06 pm #89450
From my understanding since the myelin sheaths are injured due to the auto immune attach from GBS that nerves cannot transmit signals efficiently, therefore the muscles and reflexes don’t work as they did. In theory as the sheaths heal the nerves “should” transmit signals as they did before.
For me, I was diagnosed with GBS 2/9/2009, at this time my reflexes are gone. My last EMG showed improvement to the nerves in my upper body and my lower has shown no improvements.
Our common thread in my humble opinion is this horrible disorder, each of our recoveries will be different because each of us will react differently and heal differently. But I hope someday we all can be back to the way we were before we got sick!!!!
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