Emily lost her reflexes, gained them back, lost them again, gained them back, etc. She has had her reflexes back for a few years now.

So I think if she can lose them & gain them back so many times & still have CIDP, that you can have CIDP & not lose them at all.

Kelly

Yes this is true – though it is typically one of those hallmark things doctors look for – if you have lost your reflexes it’s clear something is going on outside your control. However like Kelly said I’ve had and lost them so many times it’s like a roller coaster – oh and lets not forget that you can also have HYPER reflexes – that’s also happened to me… and my neuro will never sit so close to me again when testing my reflexes, I assure you. 😉 And really having normal reflexes just means that those particular nerves are functioning correctly in the 10 seconds he is doing the test. For me, my disease goes back and forth so much the small window during which I’m seeing the doctor is almost never representative of the big picture.

Hi Lori,

I lost my reflexes during my first attack (about 6-7 years ago), then several months after that, they came back and were ‘brisk’ then I lost them again and this time they haven’t come back.
It took years before I finally had a diagnosis of sensory CIDP.

Good luck 🙂
Kazza

Hi Lori,

I was diagnosed almost 5 years ago and I never lost my reflexes. As a matter of fact in the beginning and when I have a relapse my reflexes are hypersensitive. This led down the “rule out ALS” path. My doctor has classified me as CIDP but he says flat out we don’t really know what you have, but you respond to IVIG and your symptoms are consistent with CIDP, so we call it CIDP. My LP was a 44.8 and UCLA said it had to be over 45. My neuro said, it’s not normal. He initially thought a very mild case of GBS, slow recovery, then I relapsed 2 months later. He said, CIDP, let’s try IVIG. Like night and day after IVIG. I now get 20 grams every other week. Usually by day 12 I start to fatigue and feel leg and arm weakness, but no serious relapses, unless I get a cold/flu, and I am very functional. Hope this helps. I remember the UCLA doctor’s saying, “No you have your reflexes it’s not CIDP.” It was so frustrating. A little bit of research and I did find cases of people with CIDP, who responded well to IVIG, and they never lost their reflexes. Hang in there!

Hi Caroline: My ankle reflexes never came back either, and my other reflexes remain abnormal but at least they are there. My neuro told me my ankle reflexes will never come back, though I am not sure why. I had considerable axonal damage and that may well be the reason. Jeff

caroline,

give it time. no one knows what will happen to you. never give up. never give in. take care. be well.

gene gbs 8-99
in numbers there is strength

Well I am 1 year 3 months past my initial onset and my ankles are still gone….no reflexes, no response but….as I am still in physical rehab I am having some improved movement….as Gene said, hang in there

Stephen

Almost 10 years and no reflexes left in my arms/legs and all. I had a ‘mild’ case, but as of my last NCV/EMG damage is still there. I am open to some day this will get better.

My GBS was in 1978 and I still have no knee or ankle reflexes. I have had surgery a couple of times since and always tell the doctors about it. They usually don’t believe it and have to see for themselves. It hasn’t caused any more trouble than that. Good luck.

Hello,
As you can tell by the responses, we just don’t know and we’re effected different. I’ve had CIDP since 1998 and I still have no reflexes and I have little or no axonal damage.

hi, i am 2 yrs 9 mths post and i still don’t have reflexes from my knees down. the drs don’t expect that i will. i have to becareful when i walk cause i can lose my balance very easy.

My 16 year old was obviously very lucky. His reflexes all returned fully by two months after onset. The neurologist was pretty shocked… and judging by the responses to this thread… now I understand why.

I too had what was thought to be a very mild case of GBS following a stomach virus last January. I did not lose my reflexes. My neurologist diagnosed me via a spinal tap, and EMG, and by ruling out all other possibilities (MRI’s, many blood tests, urine tests, etc.). After 4 months of remitting/relapsing symptoms, my diagnosis was changed to CIDP and I began IVIG. What a Godsend! I continue to receive 1 time a week IVIG and am very functional although I still have relapses on occasion but the IVIG allows me to get through it. Throughout all of this I have not lost my reflexes! Previous members have also posted on not losing their reflexes. I hope this helps.

many but not all gbsers lose their reflexes. it is unfortunate that many docs do not know this. politely demad an emg/ncv. take care. be well.

gene gbs 8-99
in numbers there is strength

Gene,

I didnt even know that about reflexes! Its good to know, thank you.

girl,

if he has the equipment, it is done in his office. the person doing the test should have extensive use [daily] of this equipment, usually it is the neuro. make sure the ncv part of the emg is done. where do you live? i may have a suggestion. take care. be well.

gene gbs 8-99
in numbers there is strength

Hey Girl,

I had a ‘mild’ case and was diagnosed by the neuro without any major tests in his office. He did have me go to the hospital for an emg/ncv within a week or so of his diagnosis to confirm it. My reflexes are gone… still. I have had a couple of emg/ncv tests over the years just to confirm I do have damage and it is not my imagination.

Listen to Gene, he knows what he talking about.

Take Care,

Hi,

Just to add a bit on reflexes, the people who say they didn’t loose their reflexes, as I’ve observed over the years, were all in the diagnoses stage and GBS was verbalized, but not written in anyway in stone. Every person I’ve seen or read about, having a true onset attack of GBS, had reflex loss. What happens weeks prior to that official onset, is anyone’s guess. Almost every line people use is, they diagnosed GBS but we are waiting for test results to come back, which take days, leads me to believe a diagnoses wasn’t made. As my ER doc was yelling for a spinal tap kit, and I passed out in his arms, he knew I had GBS, but it wasn’t until almost 3 weeks later that is was officially set as the culprit. After MRI’s, blood tests and so on. Before that, just a suspect listed. Many neuropithies have like symptons as GBS, and many a flu shot has given the same symptons you are experiancing, and it’s not GBS. As Gene said, get those tests done, but you might ask about preifreal neuropithies being ruled out with this test, as opposed to demanding GBS be ruled in or out. Might make more sence to the doctor. You just have to stay on top of things and keep working with the doc to get answers. What are these same symptons as mild GBS that you have? Maybe those don’t add up either, confusing things.

[QUOTE=girlster]
I am living in the bay area (norcal). … I was thinking about visiting the Stanford Hospital’s dept of Neurology. They seem to have a clinic where they do all the tests.[/QUOTE]

Girlster, I was diagnosed 4/16/06 — and to my neuro’s surprise, I still had reflexes. It was interesting enough that they asked me to the dog-and-pony show they do at the hospital on Tues. mornings for other doctors with an interest in neuro issues. Given the rapid onset and state of my paralysis, no one questioned the GBS diagnosis. ([i]Edit[/i] I also had lumbar puncture and MRI results that backed up the diagnosis.)

What might make this interesting to you is that I’m in Santa Cruz, and can give you the name of my neurologist.

You’re right about Stanford. There was another, more severe, case of GBS at my hospital that was moved to Stanford.

girlster,
ditto olav on stanford.

olav,
could you pls see that i get the name, etc. of your neuro. i keep a list for future gbsers in need.

take care. be well.
gene gbs 8-99
in numbers there is strength

hi, just wanted to comment that I began having symmetrical numbness and weakness and after about 3 weeks my doc finally ordered EMG. My nerve conduction was almost absent in my legs and about half of what it should have been in my upper extremities. The physiologist who did my test said it was GBS. I get to a neuro for follow up and she orders a spinal tap….no protien and I do have reflexes. She says that the fact that there is no protien in the spinal fluid rules out GBS.

The more I read about GBS the more I am agreeing with her. My symptoms started at the end of March. It is now June and my symptoms are not any better and maybe a little worse. She thinks it may be Charcot Marie Tooth.

I am still really weak and continue to have numbness in all extremities. On top of it all I got a spinal headache and had to go in today for blood patch and it has been one hell of a ride since March.:confused: I’m really scared and have been crying on and off. My husband is probably so sick of it but I just can’t seem to adapt a positive attitude. Anyway, I am rambling. I, too, am curious as to the symptoms you have.

pk

I had a minor relapse last week I am 2 years post gbs and i was a little devastated. I lost my reflexes the first go around but this time i lost sensation in my right foot. I was told gbs affect people in different ways which in turn lead to misdiagnosis. I am just hjappy to be back home:)

hottie,

Sorry to hear that you had a relapse but I am glad your back home. Please take it easy and take care of yourself.

Jerimy

thanks jerimy:)

Hi,
Here are a couple of links and articles for you that state that [I]usually[/I] deep tendon reflexes are lost in GBS, but my understanding of the word usually means not always so I don’t think your doctor should be playing hard and fast with the reflex “rule”, a case of the “suppose ta’s” could leave a GBS patient in trouble.

This is from this website our own GBSFI:
[url]http://www.gbs-cidp.org/overview.html[/url]
[U]How is GBS Diagnosed?[/U]

Quite often, the patient’s symptoms and physical exam are sufficient to indicate the diagnosis. The rapid onset of (ascending) weakness, frequently accompanied by abnormal sensations that affect both sides of the body similarly, is a common presenting picture. [U]Loss of reflexes, such as the knee jerk, are [I][COLOR=”Red”]usually[/COLOR][/I] found.[/U] To confirm the diagnosis, a lumbar puncture to find elevated fluid protein and electrical test of nerve and muscle function may be performed.

and then this one:

[url]http://www.genome.gov/11009202[/url]

[U]How is Guillain-Barré Syndrome diagnosed?[/U]
“Since several disorders have symptoms similar to those found with Guillain-Barré Syndrome (GBS), doctors must examine and question patients carefully to be sure of their diagnosis. It is the pattern of signs and symptoms that help doctors make the correct diagnosis. Some of the things your doctor may check for include:

Are symptoms on both sides of your body? This is most common with GBS.

How quickly did muscle weakness progress? With GBS, muscle weakness progresses over days or weeks, rather than months as with other conditions.

Do you still have the jerk reflex in your knees? Your doctor will check the reflexes in your knees because these are [U][COLOR=”Red”]usually[/COLOR][/U] lost in GBS.

Has nerve conduction slowed down? You may be given a nerve conduction velocity (NCV) test to see if signals traveling along the nerve are slower. Because the myelin sheath, which speeds signal conduction, is damaged in GBS, the velocity of nerve signals would be slower than normal. In children, these studies may point to damage of the axons, rather than the nerve sheaths themselves.

Is there excess protein in the cerebrospinal fluid? Your doctor may request a spinal tap to check for increased protein level in your cerebrospinal fluid, the fluid that bathes your brain and spinal cord. With GBS, there will be more protein in this fluid than normal. This finding may help in making the diagnosis.”

In my own case, three weeks prior to my acute attack I had [U][COLOR=”Red”]asymmetrical[/COLOR][/U] weakness, before it did finally come on symmetrically over a 3 day period, my left side was and remains to this day weaker than my right…..not supposed to be the rule, supposed to come on both sides equally…..but that is not what initially happened to me. It is also supposed to be ascending from the feet, but mine started in my face and feet at the same time and met over the middle and caused my respiratory failure, by that point I had lost all my reflexes, but I have no idea if three weeks earlier that any problem with my reflexes would have shown up on exam……

my very best wishes to you,
cg 🙂

Like CG, my GBS was asymetrical (right hand, left leg) before total paralysis; residual weaknesses are right hand, left leg.

Shakiness caused by Theophylline, Advair, Spirva, and Xoponex inhaler…all medicines for asthma/copd…worsen GBS resids for me.

Would really like to test reflexes by kicking neuro in one of his body parts.

Regards,
Marge

marge, behave!!! i have to admit i’ve felt like doing that many times myself!!!:D especially to the residents who use the hammer the size of a baseball bat, and they keep hammering away, expecting my reflexes to comeback. no wonder i’m having soo many problems with my knees!:rolleyes: i do enjoy watching them get frustrated becasuse they can’t get any response out of me, no matter how i hold my arms or squeeze their hands, they just didn’t read my records, the part where it says “no reflexes” for the past 17 years!!!!:o

OMG Marge!

Thank-you for the best laugh I’ve had in ages…….too funny because it is too true………

hugs,
cg 🙂

Back to what Girlster was wondering. I don’t know if this will help and gene correct me if I’m wrong(like usual). When I was in in-patient rehab a friend of mine was diagnosed with Epstein-Bar. He said his doc told him that it wasn’t GBS because he had reflexes. I’m probably wrong on this but wanted to try. Take care.

Steven

My reflexes disappeared then later became at times minimally evident and at other times absent again.

I lost my reflexes in my legs and hardley any left in my arms, but I was completely paralyzed from the neck down. The worse it is the less reflexes you have is what my neuro told me way back when. So just because you have good relexes does not mean you do not have GBS there are many levels of intensity of GBS get that doc to do the test and if he wont get a new DOC!!

[QUOTE=girlster]:confused:
Hi all,
thank you for the welcome!
Can you verify for me whether this is true or not with regard to GBS? Is it always true that you lose your reflexes with GBS? I have all the other symptoms of mild GBS, but have been told by the Neurologist that it is NOT GBS because I still have good reflexes. He did not however do the EMG test because he said he was sure I didn’t have GBS, although he did indicate my symptoms might still be a reaction to the tetanus shot I was given 2 wks ago.
An MRI will follow.[/QUOTE]
My husband was diagnosed with GBS Jan 06. We live in Northern Ca. The neurologist at Kaiser diagnosed him the day we went to emergency. They did all the tests (spinal, mri) and had him on the IVIG treatments within 2 days. He was in the hospital 1 week and went to rehab for 1 week and was sent home walking. Iam new at this. This is my first posting

doest any one know that how long it will take to recover the gbs reflaxe . Becoz my 5 years son had a gbs and he lost his reflax one two month before he can not walk and after two month he can crable and now slowly he can walk 10 to 15 step . How can we know that gbs reflax is recovering . If any one have a aidea regarding these pls do mail me in these add .
[email]norbudolmala@yahoo.com[/email]

Hi! My Name Is Alofa I Live In Hawaii. I’m At Da End Of My Journey. I’m A Gbs Patient Thats Going On My 6th Yr. Of Recovery. I Spent 9/months In The Hospital Back In 1/2001.
Got Sent Home On A Gurney Been Through Aquatic, Physical & Occupational Therapy As A Outpatient Patient. With All Different Therapists, Now My Neuro Is Saying It’s No Hope Of Gaining Back My Hands & Leggs Since It’s Been Too Long.
I’ve Been Patience, Cooperative & Even Rested For 2yrs. To See If That Would Make Any Difference. It Did But Not Much. It’s The Gap Of Waiting For Approval From My Medical Insurance. That Pisse’s Me Off Cause When I’m Doing So Good Than The Therapist Tells Me We Have To Wait For More Approval. It’s Like A 1-2 Months Wait Than When I Go Back. I’ve Lost Everything That I Have Gained When I Was Consisstently Seen For Therapy.
Please, I Am Asking For Help Or For A Second Opinion From The Doctor’s At Stanford. If There’s Anyway Possible To See Me? To Run More Tests Or Research Through My Case. Seeking More Help Other Than Hawaii. I’m Willing To Travel To Find Out More Results. Where There’s A Will There’s A Way. I Still Have The Drive & Will Power To Do Anything & Everything.
I’m Reaching Out to Anyone & Everyone. To Please, Put Me On The Right Track………

Sincerely,
Alofa