Hi all, I was inflicted with GBS March 1, 2017. Its been three months now and I went from not bein able to stand and walk to normal walking. I had five plasmpheresis treatments and was able to stand and walk again (with a walker). Then March 25 I had a relapse and had to start all over again.
I am now going on treatment #12 of my plasma treatments. I can walk, but have trouble going up stairs. Numbness is also an issue, in fact my hands as numb as can be just typing this.
I have a lot of numbness in both hands and feet and it emminates up my legs and arms.
How long does this last and how do I help it heal?
Taking it day be day.
Andrew
Hi Andrew!
Welcome to Living with Polyneuropathy, I’m glad you could join us. I removed your last name from your title for the sake of privacy.
I’m sorry to hear about your relapse, taking it day by day is a good attitude to have. I think recovery from the numbness can vary drastically between individuals, some seem to make almost a complete recovery while others still deal with it. I’m sure someone along the recovery path will comment.
Hope you are enjoying your weekend 
CG
Thanks for the reply.
The forum has already been a great help.
I am surprised at how little the doctors know. I guess this is really rare
and they don’t have much experience with it.
Enjoy,
Andrew
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Hi Andrew,
I also had a relapse like you and it was very bad. I couldn’t really use my arms or legs. I had a 9 more treatments of plasma which stopped it.
That was two years ago and today I’m fine again and walking without any support. There are a few bits of GBS left but nothing of any importance except this bad lack of energy.
My advise to you is get as much rehab training as possible. I go twice a week and it has helped so much. Stairs aren’t good but they are doable and get better all the time slowly but surely. I also go for short walks on the days there is no training. My days are planned so as to use the “energy hours” to their fullest. Small naps when needed also help.
The numbness will go. Two training tricks there that I found really helped was ripping up any cardboard that was to go in the rubbish bin and taking a small plastic basket and put pinch cloth pins along the four sides edges. Then take them off again and so on. Believe me these two exercises help. I needed my hands so I could put on my earrings…an impossibility at first.
I was diagnosed in March 2015. The time it takes varies so for each individual. My motto was and still is:
Patience Persistance and Positivity.
Good luck!
Hi Andrew, my husband is still on life support 8 weeks on. In the last couple of weeks his right eye has opened, jaw is moving and head. Hope your recovery is not too far away.
Ashley
Wow, this really puts everything in perspective. What treatment is your
husband having? I hope and pray he continues to heal.
I just received an electric scooter which allows me to get out of the house
and scooter around. I was very fortunate that insurance covered such an
expense.
I was also fortunate they caught my relapse as soon as they did bc we were
heading out of town for a two week vacation and would have been 12 hours
away and I could have been in bad shape.
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Thanks for the reply. I hope and pray he continues to heal.
I just received an electric scooter which allows me to get out of the house
and scooter around. I was very fortunate that insurance covered such an
expense.
I was also fortunate they caught my relapse as soon as they did bc we were
heading out of town for a two week vacation and would have been 12 hours
away and I could have been in bad shape. Instead my vacation time will be
spent going to the hospital every other day for the next 10 days. I do seem
to respond quit well to the treatment, but I’m surprised at mother relapse.
So I will continue weekly treatment after the initial 5 (I have had 18
treatments since March 4, 2017. How were your 9 treatments spaced out? Do
plan to have any more?
Andrew
Hi Andrew
My second round of 9 treatments were back to back and took about 3 days I think. The GBS came back about 1 /2 months after my først diagnoses. ( I was pretty poorly by then so don’t remember too much). After I was finished I was moved to the rehab home I was booked into.(God bless the Danish Health System) For the first few weeks I was lifted from A to B. I had wheelchair physio training every day…hard but effective plus extra physio twice a week. After 7 weeks I could with a walker slowly "leave the building"I started a journal as soon as I could write again which was a really good idea. After the home I was granted 10 weeks, twice a week of coming there for physio . I was picked up in a mini bus, first in my wheel chair, then with my walker and on the last day I walked out without any aid and climbed onto the bus!
After that I’ve gone to the medical physio group twice a week a my local physiotherapy place…also a gift from the state. We have a physiotherapist there who helps us with our individual needs. Each session is an hour.
Like you I have a wonderful metallic red el scooter. Because of it I can do everything outside, drive into town (parking right outside the front doors of the shops) grocery shopping…well just everything. I don’t take it inside the shops but could if I wanted to.
If there are any other questions you have Andrew just fire away.
Keeping a journal gives you a good time line and physio is so important. Our muscles have taken a real beating no it takes time to get them back on track.
I think you’ll find more info here than any place else. It’s such a rare illness. We have no idea how I got it…no illness before.
I do get colds etc for much longer than average now. My doctor and I agree that the flu jab is really necessary for me now because of my poor working immune system. I’ve had no problems after getting it.
I joined here to get help which I did. Now I find myself at the other end, being able to give help. You can feel so very alone with this illness.
Good luck Andrew and keep up the good progress. Don’t drive too fast.
Mary 
Recovery begins slowly with small movements which to the patient are as big as mountains. Mine began with wiggling a toe and then being able to move my left leg 1 cm.
Time, patience and plenty of praise are the key words at this stage. Recovery has begun!
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Fortunately they caught my relapse early and walking was the main issue. I am laying here in the hospital having my third of six plasma treatments. One every other day, then one a week for 6 months before i try a immune suppressing drug, cellcept. I have already gained some strength back as I seem to respond to plasma treatments quickly (after the 3rd one).
Patients is the key word, as the Lord is teaching me that and to trust Him fully.
I’m glad you had it caught early. My motto through out the GBS journey was: Patience
Perseverance and Positivity . Good luck.
Hi Andrew, me again. It just occurred to me that I was using the word physio when I meant rehab training. I suppose both words are correct but rehab training fits the ticket better I think. I hope I haven’t caused any confusion.
Hi,
I developed GBS in 2009, 8 yrs ago. Because the 1 and only Neuro I saw initially told me I had “Fibromyalgia” which I instinctively knew was flat out WRONG, I quickly became realized he had no clue nor any interest in trying to ID what was really happening to me.
In my case, I was totally unsuccessful in finding any other Neuro locally to take my case. The 1 and only other Neuro I saw was for EMG/Nerve Conduction testing (an Essential test to be done to eval ongoing for nerve damage) that did at least confirm I was right in confirming I soooo did not have Fibro. at all.
When I asked this Neuro, who did the testing himself, to take my case he refused. I believe it was because it was more important to him to continue getting referrals from the Rheum (yes, you read that right. A Rheum is the only specialist that was willing to take my case at all after every Neuro office in the large county where I live in So Cal refused to see me because of the"Fibro" misdiagnosis) than actually helping me in spite of the fact GBS is definitely Neurological in nature.
Most said they didn’t see patients who had any neuropathy- how asinine is that? Long story short, be thankful you had someone in your corner that actually initiated any sort of treatment at all. I had no one so never did receive any treatment during the acute phase of GBS when I lost function literally by the day. It is a tough way to lose weight as well, esp when I could no longer hold anything in my hands.
I didn’t have a GBS recurrence for which I am thankful as the 1st go-round was bad enough. I too could hardly walk let alone stand up very well. I ended up seeing a PT therapist on my own, a one-time visit, to be able to get her recommendation to obtain a cane as an assistive walking device. She told me I was the only patient in all the years she had evaluated patients who had absolutely NO reflexes at all. None.
Consider yourself lucky in having found someone early on initially who actually acted as I see you received plasmaphoresis treatment. I was never given that option at all but I understand it can be helpful. Be glad you were lucky enough to have received it. More to the point now though is how helpful ,comparatively, do you think it is the 2nd time around?
While I am not an expert re: GBS, I well know how it affected me. I was unaware GBS can actually recur- scary thought that that is as I would never wish to have a repeat considering how horrible the 1st time was for me. In my own experience, things started slowly, quickly picked up a lot of speed re: new deteriorating symptoms on a daily basis, until a plateau of sorts was reached. Once attained, things very very slowly reversed. And “slow” was the operative word in my case.
When I read what you had written I also wondered if perhaps there is also something else happening as well that is facilitating or feeding into the symptoms you currently face?
I strongly encourage you to consider obtaining a 2nd opinion, preferably at a University level teaching hospital where the likelihood someone there has actual experience with diagnosing GBS and/or has had patients unfortunate enough to have had GBS, preferably more than once, that he/she personally saw.
Despite having had No Neuro support whatsoever and having gone thru the entire horrific experience without any medical support or direction, I was left with residual damage. For me, the feeling in feet has never fully returned. I still occasionally notice electric- like currents running up/down my arms. I have occ unexplained weakness in my legs from time to time as well that does resolve which I treat as a warning that perhaps I overdid some physical activity For sure I am more tired than I ever used to be. I can no longer walk on uneven surfaces because of a fall tendency. I am more aware and must be careful when going up/down stairs.
What I did end up with is some permanent muscle damage that was confirmed by having had more than 1 EMG/Nerve Conduction testing done (that is no picnic but it is Very Important to have done from a confirmatory and/or diagnostic basis). Specifically, muscle weakness involving the support of my spine that has left me with permanent back pain. Not screaming in agony level pain but enough to warrant having to take an analgesic 3x/day. I also have times when I notice some sudden muscle weakness in my right leg and right hand (I am right handed). It thankfully does pass after a bit and at least I no longer freak out at the thought something bad is again happening.
I too very strongly encourage you to obtain Rehab/PT Evaluation and Therapy sooner rather than later. I had PT, on and off, for over 1 yr and it DID help.
Consider Pool therapy as well as you can float in the water as well as stand and glide in it without requiring full wt bearing capability. If indicated, use a “floatee” or some sort of therapy board in the water as I did in the beginning that really helped. Being in the water was very soothing. Obviously this is NOT something you want to do on your own, unsupervised.
Land based PT is also needed. Speak to whatever MD you currently have that is involved in your care, be it your PCP or whatever specialist is currently directing you, to Tell, not ask, that person you want to have a PT Eval sooner rather than later. If you haven’t had EMG/Nerve conduction testing done recently, insist on that being done too to have a basis of comparison with what that the test results revealed during the initial go-round with GBS in March 2017.
Start PT ASAP.
I was left with spine issues due to the Muscle Damage I incurred from the acute from of GBS I had for which I was never given any treatment at the time when it could have helped the most. I do have muscle weakness involving my spine. If things are moving that aren’t supposed to OR something else is impacting your spine, perhaps that is worth looking into?
You can’t possibly know either way until someone considers looking into it for you OR, as necessary, YOU insist that someone qualified look into it for you given your very recent history.
I am very glad you can walk but I can’t help but wonder if the trouble you have with stairs is more related to the impact GBS has had on your muscles (ie. weakness) that allows you to stand let alone take a step up or down. Numbness causes include more than just GBS.
You’re very precise with the GBS ID date as March 1st. In order to get answers that you are now seeking, it is essential to have a Complete Work Up done. Another expert opinion can’t hurt. And , sounding like a broken record, that work- up needs to also include EMG/Nerve Conduction testing in addition to PT.
Don’t give up or wait for any MD currently involved in your care to act by directing a more complete work up. This is something you as the patient can and should insist on happening. If necessary, be prepared to act on your own without a specific referral from whatever MD is currently directing your care. It’s your life. You need answers or at least reasonable responses as to what is currently going on and what can be done to improve anything that will help you stay upright, mobile and safe.
That said, how effective do you believe the current plasmaphoresis treatment is? How is effectiveness being assessed/measured? Is it helping or not doing much? To what degree in either case? You don’t need to be a medical expert to have your own thoughts or opinions, especially as you’ve already experienced the exact same treatment only 3 months ago.
Best wishes and know I am thinking of you at this time.
No problem. I went to Physics therapy so I new what you meant by physio.
Thanks
Thanks for the input.
I do have an excellent doctor and was placed in one of the best hospitals.
Plasmapheresis works very well for me. This my 3rd time needing every other
day treatments and I respond well aftert the third treatment. So hoping
this time is the same (3rd was today).
I went to PT after initial attack and after first relapse. I now do my own
PT at home.
Numbness is my biggest issues at this time, I am weak going up steps, but
the balance problem is from numb feet and legs ( also numb in hands and
arms).
The problem I am having is that as soon as they try to stretch out my
treatments to 2 weeks I begin to relapse. So I will 6 treatments, one every
other day for 12 days then I’ll have them once a week for abut 6 months,
then see if medication will help.
I have a pool and would love to use it, but can’t because of the catheter
in my chest.
Days by day for now.
Thanks again for your input.
Andrew
Hi Andrew,
Lucky you and your pool. I have the sea just down the street but can’t use it. However that is where my walks take me. At first I walked there with my physiotherapist holding my arm. I walked along the breakwater which is flat but to get there I had to go down some very uneven steps and over the beach sand which is full of challenges.
Now you mentioned keeping faith in the the Lord. Well I was a case of Him helping those who help themselves. Even walking on the lawn was really hard but it is imperative to take these challenges and work on them until you can finally say “piece of cake” When you first begin these challenges have somebody with you.
Learn from a physiotherapist how to get up if you fall. If you know how to get up you’ll have more self confidence even if you never fall.
Never reject a challenge from your physiotherapist. They know what they’re doing even if now and then you think they are sadists.
At the stage where you are at the moment have faith in your doctor(s) they know what they are doing and find GBS patients very interesting because there are so few of us. Here in little Denmark where I live there are only an average of 75 a year.
I’ve found that time is the only thing that helps recovery. Therapy allows you to live a more normal life but it simply takes time for the nerve pathways to regenerate. Even then there may be a limit to your recovery. It’s been two years since I was diagnosed and I still have significant nerve damage to my left leg and foot and neuropathy in my right foot. I gain more muscle movement in my left foot all the time but some of the muscles have degenerated to the point that I don’t have much hope of full recovery. A point on diagnosis. I think speed of onset affects diagnosis. The initial symptoms mock several conditions, my first symptom was numbness in one arm and the initial diagnosis was a pinched nerve. I quickly advanced to not being able to walk and that’s when they started looking for other causes. From first symptom until intubation was three days. I spent 7 weeks in a coma and three months in the hospital. Initial therapy was learning to eat and walk again. Now I’m walking with a cane.
I agree about the quick diagnosis. I ran 10 miles on a Saturday, did a leg
workout on Sunday (including squats) and then by Thursday could not stand
up. Because I declined so quickly they made a diagnosis and started with
plasmapheresis. I stood up after three treatments, relapses and again stood
after three treatments and this last relapse was caught earlier by my
neurologist and started treatments every other day. Go my 4th treatment
tomorrow (Wed) and then again in Fri and Mon.
Then cont. once a week for the next 4-6 months
Hi Andrew and welcome, hang in there it dose get better, maybe not as fast as you want patients is the biggy, or it was for me. I am four yrs. Into this crazy syndrome they call g.b.s. I fill most Dr. Dont know enough about this illness, as to answer all our questions. I was told 86% is where you are at the one yr. Mark. And I was well there is no more need to see you. Wait, was my reply I still can not fully squat or my bladder is still very weak, and still have some numbness and tingling, balance is horrible, yes I did have pt for 2months, and went back to work in 8 weeks after. I was not completely , just partly paralyzed for short time. Still do to Dr. I was well enough to be released I guess. I found out later, no I still needed to be seen by Nero. Now 4yrs. Into this I have some tingling and numbness in hands and feet. Mine g.b.s. was cause by tick bit. Tick bit have some of same symptoms as g.b.s. so yes it took awhile to be diagnosed. I have now learned that I live each day to the fullest. Cause when fatigue hits it hit me hard. Yes after four years I have had to learn to adjust to anew way. I have learn to go a little slower. A happy body is a moving body, stretch alot learn yoga it has helped me. And I do walk and do a small work out almost daily. I have to stay active I am helping rise my 5 yr old granddaughter. By for now, have faith it dose get better
Thanks for the reply.