loss of reflexes’
AnonymousNovember 3, 2009 at 1:26 pm
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.
AnonymousNovember 7, 2009 at 12:20 am
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!!! 🙂
AnonymousNovember 7, 2009 at 9:28 am
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.
AnonymousNovember 26, 2009 at 9:16 am
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!
AnonymousNovember 26, 2009 at 10:10 am
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 diseases
December 27, 2009 at 2:49 pm
lost my reflex when I was onset, 2006 and not gain theim again.
AnonymousDecember 27, 2009 at 8:52 pm
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!
AnonymousFebruary 1, 2010 at 11:53 am
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?
AnonymousFebruary 4, 2010 at 7:06 pm
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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Loss of reflexes
AnonymousJune 5, 2006 at 10:29 am
At the end of 2004, I was told (by MAYO Clinic in Jacksonville, FL) that I had a significant loss of relexes in my ankles, but was also told the reflexes in my knees were “increased”…
The summary report states:
[I]”His deep tendon reflexes are nearly absent at the ankles and increased at the knees, even more so on the right…….[/I]
[I]There is evidence of a mild demylenating neuropathy, which could be diabetic in origin. Both of us had the sense that this does not adequately explain the patients symptons”[/I]…They stated I did not have axonal damage at that time…
Since then, I have weaned myself off of tramadol and trileptal…I started taking good doses of vitamin B12 Methylcobalamin…I thought I was seeing some significant improvement, not significant progression of damage…But the biggest problem I still have is weakness, especially in my legs…
Over the weekend, I was playing around, and noticed that I now have little refexes in my knees…I can give myself a pretty hefty whack just below the knee cap and do not seem to get much of a reflex with either knee…
Does anyone know what actually causes one to loose their reflexes?…I assume it is nerve damage…Is it the demylenation process/damage or axonal damage…???
Does this mean the nerve damage is still progressing? I assume it does…Has it changed from demylenating to axonal? Funny thing is that my other issues with this neuropathy have improved…Less burning sensation, much fewer pins poking into my legs all day long, etc…
Diabetic Type II w/Demylenating Neuropathy
AnonymousJune 5, 2006 at 11:01 am
Before you become too alarmed, ask someone else to whack you in the knees. It might be that the angle in which you were hitting yourself reduced the reflex and gave a false impression. I tried it once, the day before I was scheduled to see my neuro. I couldn’t get a reflex, but the next day I almost kicked her across the room. 😮
AnonymousJune 5, 2006 at 11:23 am
Just tried it again, using a big pair of pliers…:-) I can get some reflex it seems, but doesn’t seem like that much, certainly I would say not increased…
I will do as you suggest though…
BTW: I changed my original posting from no reflexes to little reflexes after trying the pliers…:-)
AnonymousJune 5, 2006 at 8:31 pm
[QUOTE=Jerimy]Geez easy on the knees GW 🙂
PS-My damage is only to the myelin at this point and I have very little reflexes.[/QUOTE]
[U][I][B]OK guys[/B][/I][/U]…Just used the pliers because I wasn’t sure my knuckles were solid enough…hehe
Thanks for the info…
AnonymousJune 6, 2006 at 5:17 am
In my experience, the reflex-issue is not so important. I lost most of them along the way long before I was dx’d CIDP (2001), and after I was re-dx’d – this time PDN – and got the right treatment, my situation has improved immensely, but last time my neuro checked, the reflexes hadn’t come back.
And I really don’t worry so much about that as long as the pain has subsided to a fraction of what it was, and my legs and arms\hands\fingers are working a lot more normally!
June 6, 2006 at 8:31 am
I originally had no reflexes in my elbows, wrists, knees, and ankles. After a few years, my neuro found small reflexes had returned in my elbows and knees. He told me not to get to excited as most adults begin losing their reflexes by 40 anyway:rolleyes:
Next time, use a rubber mallot!
I still laugh when I see the modern ‘tools’ that neurologists use…safety pins and rubber hammers. 😀
AnonymousJune 6, 2006 at 10:15 am
[QUOTE=badmommy]II still laugh when I see the modern ‘tools’ that neurologists use…safety pins and rubber hammers. :D[/QUOTE]
Funny, the safety pin seems to be a standard tool for neurologists. I always wondered how accurate that was when my neuro started stabbing me on my forehead first and then up my arm. “is it the same yet?”-“How about now?”-Reminds me of the cell phone commercial:”can you hear me now?”
AnonymousJune 6, 2006 at 8:27 pm
I started off with good reflexes, but CIDP soon ate them up! Gratefully, after struggling with extream weakness for four years, I’m finally strong again! I have been working out at the gym (first very slowly and building from there) about five tines a week. I use to be so weak I could hardly do anything. At first my nerologist told me not to go the gym, but then when he saw how strong I became he encourged me. I also went through 106 plasma pheresis, I take cellcept and norco for pain (norco also helps with the work out! 😀
My legs use to look like dead fish when the doc hit them with his little hammer. Now they are jumping again!!!! I hope the same happens for you!
AnonymousJune 6, 2006 at 9:18 pm
[QUOTE=K C’s Mom]I’m still trying to figure out just what the reflexes do for you. Mary Ann[/QUOTE]
Funny thing is I was asking the exact same thing to myself a few minutes ago…What are reflexes for? What purpose to they have?
Of course, my concern is if they are degrading so much as over 1.5 years, what else is?
June 6, 2006 at 10:30 pm
Reflexes are mainly to keep us safe. As kids, they are vital in helping us learn about our environment. Reflexes are involuntarily responses sent to our central nervous system.
The main reason deep tendon reflexes are tested as adults is because changes in reflexes are normally the first warning sign of a neurological dysfunction. When we are hit in our deep tendon reflexes, the muscle fibers are supposed to contract. When these muscle fibers do not respond, it indicates to the neurologist that there is a problem in the nervous system pathway.
It has been told to me that reflexes are not under voluntary control. However, I have tried so hard to produce a reflex that I had the opposite affect. Luckily my neuro saw me tense and concentrate when he hit my knees. He performed the same test again but had me pull my hands apart so it would be less of me concentrating and more of my body reacting normally.
What is the cotton wad test? I think I missed that one!
AnonymousJune 6, 2006 at 11:36 pm
Glad you made it back !!
One of the “things ” with CIDP is a loss of those reflexes. Like some others, I was out of reflex a while before my diagnosis. If you are getting some back, That is great.
As to the safety pin thing, they trace up a known nerve pathway to see the extent of damage. Just like with the vibrating tuning fork thing. The further up they go, they can tell how much damage there is.
I would rather they find out that way than try to guess with a $500.00 test.
AnonymousJune 7, 2006 at 5:35 am
Mary, have you never been tickled with a wad of cotton on your hands and feet: “Do you feel this? Where do the tickling stop? etc etc” to find if you’ve lost sensation, and if, how far up you’ve lost it? (It doesn’t say anything about if you’ve “completely lost it”, though). The most advanced tool I ever saw with a neuro, was a reflex-hammer with built-in needle instead of safety-pin and a very soft brush – also built-in in the handle of the hammer – instead of the cotton wad. State of the art, or what?
June 7, 2006 at 10:22 pm
LOL, Allaug! State of the art medicine at such a high price!
AnonymousJune 10, 2006 at 10:33 am
:rolleyes: I had 2 neuros that used a roller with sharp pins all the way around. ” Used that to detect “sharp” or “dull” or “nothing”
I moved to another residence. Neuro there said I had “no loss of feeling”. (Didn’t test for it–all or nothing kind of guy.”) I was malingering he reported and sent me a copy of his report to my primary. (This after I had my real Dx at Scripps. With this nut I was whole and normal.) I suppose that he was sticking to his initial schooling–If he didn’t know something it didn’t exist. (He was old enough to not known that then.) I emagine we have all gone through that. But a Neuro? I though he needed a psycho. Or was one. :rolleyes:
I live in an area where there is only 1 neuro and 1 psychol. Oh well.
AnonymousJune 19, 2006 at 12:19 pm
[QUOTE=eightplusfive]Hi, Green. Before you become too alarmed, ask someone else to whack you in the knees. It might be that the angle in which you were hitting yourself reduced the reflex and gave a false impression. I tried it once, the day before I was scheduled to see my neuro. I couldn’t get a reflex, but the next day I almost kicked her across the room. 😮 Deb[/QUOTE]
Well, last week when I was visiting my brother, I had him whack my kness…Your exactly correct…My self anticipation of the reaction was keeping me from getting a reflex response…He taped me below the knees and reflex action seemed just fine…
Well now I know…
AnonymousJune 19, 2006 at 1:43 pm
The neuros don’t even check my knee or ankle reflexes anymore. Or stick needles in me to test my nerves. With my Scripps dx they go on from there. Saturday my legs were kind of rubbery and I felt that I was walking about a yard below the floor. Still happening. And now I can’t hardly talk. Or swallow. I guess I should contact my doctor. Sure hope it’s only a stroke, not neuropathy gaining more ground. :rolleyes:
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