Axonal Guillan Barre (AMAN)
March 18, 2014 at 2:16 am
I’m reaching out to the few of us that have been diagnosed with the AMAN form of Guillan Barre (Acute Axonal Motor Neuropathy.) I say the “few of us” because from what I know, we are the exceedingly rare form of Guillan Barre….perhaps 3,000 cases world-wide and most of them are in Asia. The viral nervous system damage we suffered is due to an attack on our actual nerves (axons) rather than the myelin sheath that covers the nerve which is typical of Gullian Barre. You’ve probably been told that you have polyneuropathy, which means your outer limbs are affected equally, as were mine. If you are like me, your Guillan Barre was slow to progress. I had numbness up to my waist, but I only had paralysis from my knees down. I also had numbness in my hands and paralysis of my 2 outer fingers on both hands. My balance was and is affected, and I had “foot drop” on both feet. Your balance issues may be what encouraged you to seek treatment and that was the final encouragement for me. On the day that I presented myself at the emergency room I fell twice, once in my classroom and once in a school hallway. On my second fall I couldn’t get myself up. I couldn’t make my legs do what I wanted them to. I drove myself home, and when I got there I couldn’t move my feet.
I want to talk with others that have my lot in life. AMAN is very slow to heal, if ever. My nerve damage worked itself into my muscles. This form of Guillan Barre is an invisible disease. People see you up on your feet and they assume everything is ok. I can walk upstairs with some effort, but I can’t walk down them well. A couple months ago I panicked walking up my Mom’s stairs at night with the lights off. I couldn’t make myself go up and I couldn’t go down. I crawled up the remaining stairs. If people move too fast in close proximity to me I lose my balance. I can’t be too close to people. My level of fatigue is
epic. There have been many times that I go to bed at 9 pm but sleep until 3 pm the next day. I’m ashamed of that, but I can’t help it. I have constant neuropathy pain in my feet. If you are reading this post thus far you know what neuropathy pain is. As you know, explaining it is a whole different problem.
I’m just reaching out, but I also want to encourage people with my condition to fight for IVIG treatment. That’s not been proven effective for our condition but I will have more to say on that later.
Anyone out there with AMAN?
April 2, 2014 at 3:39 am
I have not been officially diagnosed with AMAN, although some of my symptoms match those of the disease. My official diagnosis has been GBS/MFS/CIDP.
AMAN and similar variants are described here: http://www.neuropathy.org/site/DocServer/GBS-AlanBergerMD.pdf?… It is also discussed here: http://www.gbs-cidp.org/wp-content/uploads/2013/02/AcuteCareICU13.pdf
During my initial attack in 2008 my paralysis started around my waist and went up and down from there to my extremities. This, I am told, is not the norm for GBS. GBS typically starts in the extremities. I guess I just got a worse case attack because there were other variants involved, perhaps a bit of AMAN?
I became a quadriplegic and needed help breathing within 3 weeks of onset. Today I have progressed to be a paraplegic and cannot walk or stand. I have not seen any additional improvement for almost two years now. I suffer both myelin and axon damage.
IVIg did little for me as a treatment option; I think I became considerably worse during that treatment. Plasma Exchange helped greatly, but was started too late (after a lot of damage was already done) and I noticed some improvement 2 days after my first PE.
What has been your experience with IVIg and other treatment options?
October 1, 2015 at 5:04 pm
You found me. I have been diagnosed with acute motor axonal neuropathy. woot woot, I have a man
October 1, 2015 at 6:26 pm
Thanks for reaching out. We are an exceedingly rare group. I have a top-notch neurologist at Northwestern Memorial Hospital, and I’m his first ever AMAN patient. One thing you should know…..IVIG infusions are working for me! My initial damage hasn’t healed, but it’s preventing the progressive damage that I had until I started monthly treatments. December will mark my 3 year “anniversary” and I’m holding steady.
Let me know if you need any advice.
October 3, 2015 at 10:32 pm
My name is really Michael
But I had two rounds of IV IG at my onset and they didn’t really seem to stop it. But some pretty special chemotherapy put a stop to increasing damage. My legs are healing faster than my hands. So posting is a courtesy to Dragon software
June 7, 2016 at 3:50 pm
Hello to all! Another member led me to this thread – I may belong here!
I just met with a Neurologist from a major teaching hospital in Chicago (Not NW) who looked at two abnormal EMG reports that evidently show axonal damage but no indication of demyelination. Therefore, she said that there is no reason for a nerve biopsy or spinal tap and that I most likely have an idiopathic polyneuropathy with no known cause or treatment. IVIG would not help me; only pain medication.
My symptoms are progressing where I am now only able to walk very slowly and only for a few blocks. I have leg pain and weakness, muscle twitching and jerking, plus I have nerve pain in chest and abdomen, tingling and pain in joints, hands and arms. BUT – I am not paralized – only numb from the knees down.
Does this sound like AMAN or similar? Has anyone been helped by IVIG or other treatments for axonal polyneuropathy?
June 7, 2016 at 4:07 pm
I don’t know. I have been diagnosed with AMAN and that means I have damage to the motor axons only. With the exception of a couple days of acute pain when this all started I have never had any sensory issues. So my neurologist told me that IVIG would not be useful, because those infusions are helpful in that they stop the progress of the demyelination.
But if your symptoms are progressing IG might help.
June 7, 2016 at 4:10 pm
Thank you, Michael. I’m in Chicago so perhaps I should see your Neurologist at Northwestern? Or, do they have a whole group of Neuros who are familiar with axonal neuropathies?
June 7, 2016 at 4:11 pm
I’m in New York and my neurologist is at NYU.
And I’m sorry about my avatar I guess I have to change that if I can figure out how.
June 7, 2016 at 4:18 pm
Oh! No worries. Thank you again.
June 8, 2016 at 12:02 pm
I am in a rarer group: ASMAN. It is my understanding that it is similar in some ways to AMAN
June 8, 2016 at 12:23 pm
Well, I’m glad you found my post! We really are a rare group! The symptoms you describe sound like AMAN to me, although it’s always the EMG and nerve biopsy that can conclusively diagnosis it. I am walking proof that IVIG is a possible intervention for axonal neuropathy! At the onset of my GB variant I was given a 5-day treatment of IVIG by mistake. My neurologist was unfamiliar with the medical findings that says that IVIG is not effective for AMAN, so she treated me as she would have for any GB patient…but it worked! It reversed the paralysis/numbness that I showed, and after a week in the hospital, I walked out with only minor ambulatory problems. The long-term problems manifested after I had initially recovered. Within 2 months I had the same symptoms back and worse. It was then that I started treatment with Dr. Aggarwhal at Northwestern in Chicago. He did another EMG and my numbers had bottomed out. I showed worsening problems in my nerves and the damage had moved into my muscles.
Dr. Aggarwhal prescribed IVIG treatments because it had worked for me in the hospital when I was diagnosed. My Blue Cross/Blue Shield of Illinois insurance denied me multiple times because IVIG was shown to be ineffective for AMAN. Dr. Aggarwhal and Axelecare (my IVIG provider) filed multiple appeals and went as far as submitting my case to the Illinois Insurance Commission (which handles insurance appeals when it gets that far.) The State of Illinois overturned BC/BS’s denials and after 2 months of fighting I was cleared for IVIG. I received 5 loading doses of IVIG in August of 2013 and saw immediate relief from many of my issues. Since that time I have received 2 doses per month and I am holding the progressive problems with AMAN at bay. My hands healed completely, my muscle damage was reversed, and the strength in my lower legs came back. My sensory nerves in my feet are permanently damaged, but it only causes me numbness, and pain when I stand too long. Before IVIG I was headed for a wheelchair.
There has been very little study on how IVIG may treat AMAN patients because there are very few of us. You need a neurologist that will fight for you for possible treatment options. IVIG has saved my life and I owe it all to my neurologist that took the time to sit through multiple peer review processes to get me the treatment that works for me. The bad news is that my AMAN is progressive without IVIG. Apparently the virus the tripped my immune system caused a permanent problem. In October of 2014 I developed a massive preliminary embolism that was caused by IVIG. That is a rare side effect of IVIG, but unfortunately I drew a second rare card. I had 8 weeks off of IVIG and my problems with numbness, foot drop, balance and neuropathy pain resurfaced after about 4 weeks without IVIG. Now I am on a blood thinner along with my IVIG and have had no further problems.
If your insurance will allow you to see Dr. Aggarwhal at Northwestern, I would make an appointment as soon as possible. You are welcome to tell him that Jennifer Clifford referred you. I am his only axonal GB patient, so he will for sure know me! He is with Lakeshore Medical Associates and the number is 312-926-6000.
Get active and get busy fighting against this horrible disease!
June 8, 2016 at 12:28 pm
*** sorry, darn autocorrect, I meant pulmonary embolism
June 8, 2016 at 2:35 pm
Thank you so much, Jennifer! I am very, VERY grateful for the time you took to tell your story. I will call Dr. Aggarwhal now – I live downtown so he’s right in the neighborhood. And, I wish you the very best with your health. Your story, like so many others on this site is an inspiration to people like me who are determined to — at the very least get a diagnosis! And, even more it gives me hope that I can get treatment. You are a pioneer for sure! Even though IVIG was at first thought to be a medical mistake you opened a path to stopping progression of “this horrible disease” as only someone who suffers from AMAN could understand.
Thank you again … I’ll follow up with you and others on the site on my progress (numb and tingling fingers are crossed!).
June 8, 2016 at 3:16 pm
Recent studies have shown patients with AMSAN had anti-GM1, anti-GM1b, and anti-GD1a IgG antibodies, indicative that AMAN and AMSAN share a common immunological profile. Some consider AMSAN a variant of AMAN. More info can be found here:
June 8, 2016 at 3:32 pm
My ASMAN diagnosis was when I had my EMG and an MRI back in Oct. I spent 85 days at the University of Columbia hospital. I was totally paralyzed from the top of my head to my tippy toes. I spent most of the time in a medically induced coma.I had to have an emergency trach, feeding tube and catheter. I really didn’t start any therapy until Aug/Sep of 2014. I did go to RUSK Rehabilitation Center in Columbia and the worked me hard 5 days a week, sometimes 6. I was finally able to come home Feb.2 2015. Since then I have done my own therapy at home. I now only see my nuerologist and physical rehab dr’s once year. I onl have to see the neurosurgeon if my spinal stenosis in my neck gets worse. So I’m not doing too bad
June 8, 2016 at 3:45 pm
Thank you for the info on ASMAN. It is amazing that you are doing so well. Congratulations! And, I hope the best for you.
June 8, 2016 at 3:48 pm
Thank you, Jim! And, thank you for linking me to this thread. I made an appointment with Dr. Aggarwhal for June 22 (thanks to Jennifer and her very helpful post!). I don’t know what I would do without your help and the help of others … happy that I stumbled across this site a couple of months ago. I was hitting dead ends and now, no matter what the outcome, I feel I am on the right track.
June 9, 2016 at 11:12 am
O’ Dear I don’t know if I am in the correct place. But I am diagnosed with GBS but I don’t know if it comes with AMAN……. I was diagnosed over a year ago where I had a lumbar injection to get the fluid from my spine to make sure. I do have Rumatoid Arthritis and Osteoarithis and Osteopenia Arthritis and now GBS. I seem to have a family hanging on me. I have had two major back operations. My one leg from the knee down is numb. Battling with my toes. Now my other leg is getting all those tingling feelings but the pain takes my breath away. I have had Polygam and I have had dialysis. The pains are increasing and so is all the tingling. I am battling with my hands, hip and legs. Nothing has been explained to me at all. Yea! like I know what GBS is. All the doctor told me was that one in 100 000 00 gets it and I am in that bracket. I get real depressed about the whole thing as I am on heavy medication and go to hospital every month for an actemera infusion for my RA. I really know nothing about this disease. Can anyone here help me out? Sorry I should have started with my name excetera. My name is Rose 63 years old. I can’t work and wish I could. I live in Pinetown, Durban RSA. (Africa) Can anyone send me to the correct group but I do think I belong here!! Any help is really appreciated. Thanks xx
June 9, 2016 at 11:34 am
GBS has several variants. If you look at teh publications on this site you can learn all about it. Also try scrolling through the main forum. I just started using this site yesterday and have found it very helpful. http://www.gbs-cidp.org/gbs/all-about-gbs/. Hope this helps you out. Angie in Northeast Missouri
June 9, 2016 at 12:24 pm
Rose are you on any depression, anxiety or sleep medications? I ask because I am. I take Effexsor HCL for depression, Xanax for anxiety and Seroquel to help me sleep. The Seroquel also helps with my bipolar disorder. I see a psychiatrist every couple of months too. She explained what GBS has done to our bodies like this: Our bodies have been through such a traumatic experience that we can suffer from anxiety, depression and PTSD. It’s difficult to go from be a totally independent person to having to depend on others. I wish you the best Angie
June 9, 2016 at 5:11 pm
Hi Angie, thanks so much for writing to me. Yes on both questions. I take Mylan – Alprazo 1m x2 to help me relax and Dopaquel 25mg x2 sleep. Trepline 25mg at night. I still don’t always sleep sometimes I end up taking another Alprazo to relax me more. I have also had a fare share of none believers in my family and basically no support up until now. I am too ashamed to say to anyone that I am not happy and no one helps me. My husband as it is says I moan too much. It really hurts…. Thanks for sharing xx
June 9, 2016 at 7:20 pm
I know the feeling Rose. My family was real supportive when I first got home. I’ve been home for 1 year AND 4 months now. Since I have improved so much they tend to forget I get muscle fatigue, Hang in there
June 11, 2016 at 10:12 am
@Angela, Thanks so much for taking the time to read my message and reply again. Not many people do so it really means a lot. I will do my best and hang in! There’s no other way hey! xx
June 13, 2016 at 1:38 pm
Jennifer – I am Seeing Dr. Aggarwahl today! I was able to get in sooner because of a cancellation. Hoping he will help me … Pain in my legs is very bad and I can only walk a short way and must stop. I hope that someday I will run again!
Thank you again for your help. Even if it doesn’t work out it feels good to have hope!
June 13, 2016 at 1:39 pm
Oh dear! Now I hope I am in the right place!
June 13, 2016 at 3:18 pm
Fantastic! I hope you will get some relief! Dr. Aggarwhal has been a God-Send for me! Sending you (and everyone else on this thread) my prayers!
June 13, 2016 at 4:07 pm
Hi again, Jennifer (and other friends!):
Dr. A really is very, very good! He is very thorough and I learned so much more from him about my condition. It is definitely an Axonal Neuropathy. He ordered a nerve biopsy and referred me to the neuro muscular group. I’m not sure which Dr. to request, but it seems that they are all very good at Northwestern.
He explained quite a bit about IVIG and warned me that there are more risks for older patients like me; I’m in my late sixties. So, now I need to find out if anyone out there has done well with IVIG at my age. My worry is that this is progressing quickly and it may plateau at some point (learned that today!), but it also might continue to cause more weakness.
BUT – thank you again. I feel I’m in the right place now for treatment.
June 30, 2016 at 12:12 am
Add one more to our very rare group. Finally a place where I can talk to people with this exact variant I have. I was diagnosed in March 2015 and recovery is slow. I currently walk with leg braces and just want to fully recover. Does anyone here have a full recover story they can share as recently it’s been getting hard to stay positive about a full recovery. I just want to recover so bad because I am starting college in August and want a recovery so bad. Also if anyone can list anything that has helped them such as certain medicine or therpays or anything. Also my biggest problem right now is balance, I can’t stand still without holding on to something, does anyone know of a way to help with balance? Thanks guys
June 30, 2016 at 1:43 am
Ryan, I was not diagnosed with AMAN, but I definitely had axonal damage in my legs. The recovery depends on the nature and extent of the axonal damage. Permanent residuals are typical, but will vary from one individual to another.
In my case I used a wheelchair for a few weeks after the start of recovery, then a walker for about a month. After that, I used a cane for about a year and a half. Today, five and a half years out, I use no assistive devices but have permanent residuals of wobbly knees and pain in the feet.
Recovery of balance is mainly a matter of waiting for the nerves to heal (to the extent they will), but exercises to restore muscle strength are also necessary. A physical therapist introduces many exercises to the patient and most of these can be continued at home. One of the simplest is to use Therabands in various ways, because they are inexpensive and adaptable. For example, to exercise torso muscles, tie the band waist high to an immovable object, hold the band, and rotate to stretch the band. Torso strength is essential to balance.
July 1, 2016 at 10:46 am
GH – thank you for the information. I have been diagnosed with axonal polyneuropathy and have been told that there is no treatment. Was the onset of your condition gradual or sudden onset? And, were you also told there was no treatment? Thank you again !
July 1, 2016 at 1:28 pm
My axonal neuropathy took about a month to paralyze me so I don’t know if that sudden or gradual but I was also told that there are no treatments. Just a slow recovery with physical therapy and decent nutrition
July 1, 2016 at 2:29 pm
Thank you … I’ve been told that gradually it may plateau but likely will progress.
July 2, 2016 at 9:54 am
rec, I was classified GBS, then CIDP, and was given the usual treatments– first IvIg, then plasma exchange, followed by drugs. If AMAN is a type of GBS, I would expect IvIg to be administered.
July 2, 2016 at 12:51 pm
Here’s a link on treating AMAN: http://www.medscape.com/viewarticle/730670_9
I had good results with PE. I don’t know why they wouldn’t want to try it except for high cost.
July 2, 2016 at 1:47 pm
I clicked on the link for the Medscape article and was directed to a member log in page. hmmm, forgot my id and password. Recovered and reset them, respectively.
For those with sign in trouble the two bottom lines for me were-
“Because AMAN generally follows a similar clinical course as AIDP, IVIG and PE are assumed to be appropriate treatment interventions, especially in patients with severe presentations.”
“Currently, it is unknown if IVIG is the most appropriate therapy for AMSAN. However, given the severe nature of this variant and the current lack of data, the use of IVIG or PE should be considered as rational treatment options in patients with AMSAN, as with the other GBS variants. ”
July 2, 2016 at 3:04 pm
Wow, I’m glad that people who are dealing with a GB variant have found my thread, but I’m sorry to hear that people need this thread! I’m happy to share that I was off-communication for some time because I just got back from leading a 12-day trip to Costa Rica for my high school students. The good news is that I am a living reminder that AMAN is not a wheel-chair prognosis. I was leading trips to Costa Rica before my GB/AMAN and I am still leading them. I am not what I was before my health crisis, but I am way beyond what I thought I would be. My trip was limited on what I could do in a day, but I was there and I managed.
Ryan_Wilson, you should really ask your neurologist to look at all possibilities for you, including IVIG. The scientific literature/studies say that IVIG isn’t effective for AMAN, but I’m living proof that it is. I still have numbness/neuropathy pain in my lower legs, but it’s manageable. My balance is still terrible, so that and the sensory nerve problems are probably permanent at this point. But, my motor skills have improved greatly! I still suffer from fatigue, but after 3 &1/2 years, I’ve learned how to manage my symptoms. You have to get serious about finding a neurologist that can fight for you and your treatment options.
All of us need to be looking toward stem cell transplants as a permanent cure. Long term AMAN and GB problems are because a virus tripped our own immune system to attack our nervous system. Those of us with chronic GB problems had a permanent virus flip to our immune system, when normal GB patients had only a temporary flip. We now have an autoimmune disorder….essentially, our own immune system sees our nervous system as a pathogen and it tries to kill it. Stem cell transplants involve harvesting a person’s own stem cells and keeping them viable. The next step is to give the patient high doses of chemotherapy to completely kill the patient’s immune system. When the patient shows zero sign of the host immune system, they are then infused with their own stem cells to regrow new immune cells. Essentially, we’ll get a new immune system without any remnants of the virus. I went through testing at Northwestern Memorial Hospital’s stem cell clinical study treatment program for CIDP (Chronic Inflammatory Deymelinating Polyneuropathy). I was denied for the clinical study because I have axonal nerve damage rather than deymelinating. I was told that they could offer the stem cell treatment under a “compassionate use” designation….but it’s not covered under insurance. You may also see in the news that stem cell transplants are showing cures for MS patients. This will be our cure, so get involved on demanding it.
Keep the faith! Get the best doctors you can! Let me know if you have any questions!
July 2, 2016 at 4:23 pm
Much thanks to each of you. I am rapidly losing control of my legs which are very painful, unsteady and weak. Your experiences and references to medical material are VERY helpful. I don’t know how to thank you for taking the time to help a complete stranger. No matter what the outcome – I will pass along help to others as best I can. Thank you again !
July 22, 2016 at 11:43 am
I was diagnosed with AMAN type GBS in July 2013 while backpacking in South East Asia (Thailand to be exact). My first symptoms were extreme abdominal pain followed by foot pain. Over the course of 2 weeks this progressed to complete paralysis from the waist down, arms, hands and abdominal muscles. I was treated in an excellent hospital in Bangkok where this type of GBS is commonly seen. I received 7 sessions of plasmapheresis and remained in hospital there for 4 weeks. I was then sent to my home country where i remained in hospital for and additional 5 months receiving physiotherapy etc. Overall recovery was a year and i am pretty much back to my old self. I still get some nerve pain now and then which i take Lyrica for…seems to work very well.
July 22, 2016 at 3:03 pm
Wow! That is really interesting….because if you look up AMAN enough, you’ll see that the majority of cases are in southeast Asia. One of the questions most of us in the US probably ask ourselves is…”Where the hell did I pick up this virus?” I’ve never been anywhere in Asia, but I do travel to Costa Rica one or two times a year. I assume I probably picked it up in an airport somewhere! You on the other hand probably have no question of where you got it. You’re also pretty lucky that you’ve had a relatively complete recovery because AMAN is slower to progress, but often chronic. Glad to know you have rounded the bend!
July 22, 2016 at 4:32 pm
@jlcliff30…yeah my recovery was better than the doctors initially thought. I guess you never fully recover from GBS regardless of the type (thats what my neuro says anyway)…and there is always some level of residual damage left over even if you dont notice. What he did say was the fact i received plasmapheresis and not IVIG was key to my recovery…but i’ve heard hundreds of different opinions on this so not sure what to believe.
July 22, 2016 at 4:20 pm
Any neuro. docs here? Or anyone that can give me their interpretation of this EMG with NCV.
I’m going to my new doc.,…. : https://weillcornell.org/rlchin ASAP
I’m on the 3 GBS Facebook groups too.
Mahalo and aloha,
This GBS is really f in’ with my surfing!
July 23, 2016 at 10:56 am
Great to hear that you’re doing so well! I am very close to getting a diagnosis (fingers crossed!). Waiting for results of a nerve biopsy. But, no matter the result I’m going to Phoenix in early august to one of the GBS/CIDP centers of excellence. How long did it take them to diagnose you ? How long from first symptoms to treatment?
July 23, 2016 at 2:35 pm
My symptoms progressed rapidly over a week. My initial diagnosis was AIDP, then AMSAN last year. I still have the muscle fatigue and mostly manageable pain in both feet. I am pretty much fully functional motor skill wise. I’m working on correcting drop foot issues mainly in my left foot. I just started mowing my yard with a push mower this summer, so there is hope. It just takes longer for our special group. My journey started May 19 2013 and I find myself doing more and more each month
July 23, 2016 at 6:29 pm
@rec60661…the onset of my symptoms was very rapid..less than two weeks to complete paralysis of my 4 limbs. Treatment (plasmapheresis) started on day 12 from the initial onset of mild symptoms. My biggest struggle in the year of recovery was the use of my hands, which were slowest to return…playing guitar really helped to bring them back thankfully
July 23, 2016 at 7:04 pm
I was totally paralyzed.I was in a medical coma for a little bit. I was on a respirator ( died and had to have emergency trach) until late July. My eyelids had to be taped shut so my eyes didn’t dry out. I started regaining arm/ hand functions slowly in Aug. I was able to move my head in late July. I am happy to say my grandson and I are learning to walk together. I can walk for 20 mins max before muscle fatigue or lower back pain attack. I am doing so much more now than I have ever done before.
January 2, 2017 at 7:05 pm
I was not diagnosis in hospital but I had too see nervdoc few years ago and he had work at Hoskinshospital and he asked me a lot of questions and he told me I was as school examples of Amman slow progress and still have lot of all kind of nerv pain
January 3, 2017 at 10:47 am
Hi Helga … I believe I’m in a similar situation. I had very gradual progress for many years with nerve pain in my toes and left hip. Suddenly a year ago pain accelerated in feet and legs, back and hips. Three EMG’s over the past yea show axonal dying back that is actually neuromuscular: my calf muscles continue to shrink even though I am walking and working out as much as possible.
I am told there is nothing to be done, except hope that I don’t experience another “accelleration”. They did not diagnose it as AMMAN. We tried one round of IVIG (which the insurance company is refusing to pay). I did improve a couple of weeks later but was told by two nuero’s that “there’s no point in continuing”.
I am very weak in legs and core and balance is very poor. Numbness from toes to knees is severe (feet feel like cardboard when I tap them together). I got off of the pain killers and keep my mind busy to deal with the pain and weird sensations. I highly recommend physical therapy … it really and truly helps you feel more normal and you CAN improve your balance.
Has this affected your hands? I am dropping things like crazy and everything feels very smooth. Also, get very severe cramping in fingers and have sore thumb joins that fluctuate between mild and severe pain.
Thanks in advance for any info … and wishing you the best!
January 3, 2017 at 7:23 pm
I have been feeling more numb that used too be and weaker on feet it is getting more difficult to stand up from chers it have been turning to worsen since July I try to work and go to gym to get more strength into my muscular so times when when I’m walking I feel like I have twisted or broken my ankles and the pain is so much I could scream, this pain and all others remind my how I was feeling when I was getting Gbs. I try to stay up all day but if I don’t lay down over the day my pain get unbearable in the evening and my feet are burning, and spasms get much worse.
I don’t tell my family much how I’m doing because I don’t want theim worry about me the onset was too much for theim. But now I’m very worry about that I’m getting relaps I have this bad pain between my shoulders like I had when I was onset I have not had that pain in 10 years. Sorry I’m poring out here but I got very scare I have hard time walking on my usually speed and feel like I’m drunk I can’t walk straight. Should I talk to the docs or just wait and see if this get better?
February 15, 2017 at 9:05 am
Helga – I have as many questions as you! I had gradual onset as well but then sudden onset within weeks 0f receiving a flu and pneumonia shot. Axonal “dying back” was confirmed by EMG; my diagnosis is idiopathic, progressive sensorimotor neuromuscular polyneuropathy. My doctor suspects it is a GBS variant but spinal fluid and nerve biopsy were inconclusive.
In an effort to slow the progression I had one round of IVIG and saw mild improvement, but muscle atrophy in lower legs, core and ankles is progressing.
Now we are trying a 4-week pulsing course of Prednisone (80-60-40-20). Sensory symptoms are “on fire” … much increased nerve pain and numbness. I can deal with that if the anti-inflammatory effects of prednisone work.
Has anyone had success with Prednisone (or failure?). Ok now to get the straight story!
PS: And, Jim from LA … special note to you in thanks for your very valuable contributions to GBS-cidp members.
February 16, 2017 at 12:19 am
Renee, Thank you for your very kind words! I really appreciate your encouragement to continue posting here! I hope you recover fully from this awful disease… and soon!
I had success and failure from Prednisone. Prednisone coupled with PE stopped my CIDP dead in its tracks (at least for now)! However, it has had many adverse side affects for me. Gave me cataracts, diabetes, shingles, fat face, shaky nerves, thin skin, and a rare condition requiring neurosurgery of the upper sinus track.
I wish you well!
February 16, 2017 at 6:58 am
Jim – Oh, dear ! Talk about taking the good with the BAD! Heightened nerve pain and EXTREME lower leg numbness has really affected my walking, but your mention of “shaky nerves” confirms that this is a common side effect. So far, other than nerve pain I have the fat face happening (but, actually – it makes me look younger ! Trying to figure out a way to keep that going).
I do love hearing that it STOPPED the CIDP and truly hope that continues while you deal with all of the other problems: At least they are “treatable” !
Thank you again!
February 26, 2017 at 3:43 pm
Hi I’m in the medical field and was
Dx with axonal GBS July 2015. I spent
two weeks in the hospital and had seven
rounds of PE. I was moved to acute rehabilitation for one month and followed by six weeks of subacute rehabilitation. I came home in late
October using a walker,AFO’s and wrist braces. I still needed help with my basic needs but being home gave me motivation. After a few weeks my visiting PT suggested outpatient therapy but I didn’t want to go with the walker.
My motivation stepped up and I started walking without my walker. I would go outside to my backyard and walk around and go to the mall and restaurants with my wife and daughter. With this being the winter I could hide the wrist braces but when the spring came I began to feel discouraged about my hands. I tried very hard working with OT to strengthen my upper body and arms. My OT said that this would make its way into my hands and by late summer 2016 I was riding my bike after noticing movement in my wrist. I stopped using the wrist braces and began concentrating on my foot drop so I stopped the AFO’s and my PT started me on the treadmill. I worked on improving my gait and heal to toe walking. This brought me through fall and winter of 2016. I’m still waiting for my recovery to come back to my hands and I feel like it is going to. I can move my fingers and straighten my thumb and index fingers. I gotten back a lot of my independence, I drive and shop on by myself. I still have numbness in my big toes and my walking is improving. I have not returned to work completely, only twice a week. I go to therapy three times a week and look forward to working out with patients who have different experiences. I hope to hear from those in the forum who have been dealing with axonal GBS for years and to get updates on where they are now.
February 27, 2017 at 9:10 am
I hope I’m in the right thread now.
February 27, 2017 at 9:40 am
My journey has been filled with ups and downs like many of you. I visited my acute rehab site last week and found it to be wonderfully encouraging . I met with my PT and OT therapist who could see my improvements. As I was leaving the neurologist who gave me a EMG and confirmed axonal damage. I told him I was going to my neurologist in April and was considering having another EMG . He said it would only show what I already know and recommended that I just let it continue the clinical course. I would appreciate any thoughts on repeating the EMG at stage of my recovery.
February 27, 2017 at 9:43 am
Besides it did HURT very much.
February 27, 2017 at 1:10 pm
Hi every one, Im went to hospital in january and they could not find out why my feet was getting so weak, they nerv tested me, and as usual they cant understand why Im walking, because I have so very weak respond in nerve test and my hands are also with very low respond. But because I did not paralyzed they did not send my to rehab center, and Im struggling every day now with my feets and hands and lot of new pains. I cant get IVIG for last time I got it for 10 years ago I did not tolerate it my white bloodshell went down and I was in great danger of getting infection. But their result was after the spine tab that I had a fleur up what ever that means, I got feeling that I was not treated right because they had no idea how to deal with this and they don’t believe you can get GBS more then one time, this was my third time in 11 years. I told theim what the nerve doctor had told me about there was damage in the nerv them self not only in the mylane. They just looked at my and said that was very rare but that was the day after I told them I thought I had aman. So now Im trying to get to my doc at the hospital to get something that can help my to over come this pain and Im now numb from my toes to my hips, have hard time walking for I have little balance. so wish my luck to get some help, the system here is not for sick people you have to have strong will and be healthy to get something done in our healthcare system.
greetings from Iceland, Helga
March 1, 2017 at 7:52 pm
Seems our little group is growing. Haven’t been on here for a while. I have AMSAN variant. I’ve been watching my very energetic 18 mo old grandson m-th for a month now and just started driving when my feet will allow. The residuals are just now starting to really bother me ( diag May 2014 home Feb 2015). I’ve been a lot more active and on my feet more with the grandbaby here, he’s very motivational. When he leaves I rest up for the next day.
I still take gabapentin 2x a day and oxycodone as needed (rarely). I’ve never been put on prednisone or had weekly ivig treatments. I do my own home therapy also.
March 1, 2017 at 7:57 pm
Ron I had an EMG done a year after I was diagnosed. It didn’t hurt too much and I discovered my feeling in my hands was actually worse than I thought it was. I felt I had full feeling back but it was abd still is missing in my fingertips
March 3, 2017 at 11:27 pm
I appreciate your response and I have decided not to have another EMG. My OT therapist recommended the same.
April 15, 2017 at 4:41 pm
Hi guy´s well I saw the nerv doc this week, and Im not getting any better since january, and the doc is talking about getting my on some meds and treat my like CIPD so now I cross my finger that it can help, I have no feelings in my front feet only in the heels, and if that goes then Im not sure I can walk anymore.
what is your opion on IVIG like they give CIPD is that working or should they try Plasma rather.
Greetings from Iceland, Helga
April 15, 2017 at 5:11 pm
Hi Helga, I’m sorry to hear you’re not making as much progress as hoped. Both IVIg and PE can help treat AMAN.
If conditions are worsening for you, that could be evidence that there are numerous bad antibodies loose in your system and doing more damage. If so, 2-3 days of PE to start, followed by IVIg may provide the most help because IVIg won’t remove what’s already there. PE will filter out the bad antibodies, but won’t stop your system from producing new ones like IVIg will do.
Here is a an article about treating AMAN:
I hope insurance companies in Iceland have the patient as their top priority and will not impose stringent requirements on your treatment choices.
May 17, 2017 at 8:53 pm
I just had an EMG today and learned I have axonal neuropathy. I wonder if it is Axonal Guillain Barre, as I was previously diagnosed CIDP. I see my Neurologist on the 23rd of June; another doctor did the EMG. The doc doing the EMG said all of the nerves that she tested in my lower extremities and low back have slow or absent response. We are doing the upper body at a later date.
I have some of the exact same experiences as many of you, having random sensations, pain, etc. But one that struck me is that my last two fingers on both hands intermittently go numb. Especially when holding things.
I wonder what my Neurologist will have to say!
I am receiving IVIG at home starting this Friday. I will be getting a 5 day loading dose.
Good luck everyone!
August 13, 2017 at 8:35 pm
It’s been a while since I posted anything. I was diagnosed with axonal GBS in July of 2015. My recovery has been slow but steady. I found getting involved with as many activities as possible helped a lot. PT and OT at times seemed worthless and frustrating but, I was constantly reminded that GBS is getting better slowly. Now at 2 years and a couple of months since my diagnoses I’m jogging around the local high school track. My OT therapist and neurologist both say the hands are the last thing you get back and is apparently true for me. I continue to strengthen my hands combined with weekly massages following hot wax treatment. I have noticed some occasional muscle spasms but, only in the morning when stretching and only lasting seconds. I know every case is different but, if my experience is of any encouragement I will continue to update.
August 13, 2017 at 8:59 pm
Were your hands first to go numb? They said my feet would be the last to recover for me. My journey started 6/14 and I am stil working on walking fast. I was paralyzed from feet to top of my head.
August 13, 2017 at 10:07 pm
On July 7th 2015 after returning from vacation I noticed my left foot became floppy and I just attributed it to fatigue from my long drive home. However around 11:00pm I woke up to find my left wrist had dropped and raced to the E.R. only to be sent home and referred to a neurologist, where by the morning my right wrist had dropped. The neurologist diagnosed me on the spot and admitted me to the hospital where PE was started by 4:00pm the next day. This was the start of my 2 week stay with 7 rounds of PE before being discharged to four weeks of acute rehabilitation followed by six weeks of subacute rehabilitation.
August 23, 2017 at 11:16 am
I want to share good news I’m getting ivg next week I pray that it will help me get some help get some strength back and hope relife some of my pain. Xoxo Helga
July 20, 2021 at 6:10 pm
71 years old and very active and still working. AMSAN here since last August. After some misdiagnosis, I was tested for and found positive for the antibodies in December.
I have never had any pain or paralysis (yet) just numbness and incredible fatigue. The fatigue is very bad in my shoulders and arms. The legs are not so bad mainly numb.
I feel fortunate compared to some that I read about as I can function ok for a few hours a day. I also had nearly 70 years of great health leading up to this as I watched friends and family die around me. Life goes on. IVIG is my tonic.
July 20, 2021 at 6:12 pm
Thank you all. This organization has been a blessing.
You must be logged in to reply to this topic.