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.

Mine are gone as well, knees, ankles, and elbows. I can run slow and lift weights though.

Jaymes

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.:)

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!!! 🙂

Tigurr,
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.
Diane

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!

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

lost my reflex when I was onset, 2006 and not gain theim again.

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!

My reflexes disappeared in 1954 after my first bout with GBS. I have gotten on well without them since.

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?

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!!!!

Scott
GBS 2/9/2009
IGIV Treatment

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

Pliers? Ouch!

Deb

Geez easy on the knees GW 🙂

PS-My damage is only to the myelin at this point and I have very little reflexes.

Hi GreenWing!

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!

Cheers!;)

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. 😀

[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?”

Have Amercan neuros advanced beyond the cotton wad?

Hi,

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!

Take Care!

I’m still trying to figure out just what the reflexes do for you.
Mary Ann

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!

Greenwing,

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.

Dick S

My neuro must be advanced: she uses a hat pin rather than a safety pin.

Deb

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?

LOL, Allaug! State of the art medicine at such a high price!

: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.

Patricia

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: