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1

I was diagnosed with Guillain-barre Syndrome in December 2014. It started on a Saturday morning, I notice my finger tips and toes were numb. By the afternoon my entire fingers and toes were numb.

Later that night my feet were getting numb....I thought it was a circulation issue. The next morning, I woke and my entire hands and feet were numb, I could no longer tell water was hot or cold it just hurt. Monday, I felt terrible and tired and was leaving for San Francisco to run a 250 person conference. Before I left I decided to go to urgent care and see what was going on. I was told it could be a vitamin deficiency, diabetes, or possible multiple sclerosis!

So I drove to San Francisco (my foot kept falling off the gas pedal so I used the cruise control more). For two days I had not been sleeping well at all, waking with constant nerve pain etc.. When I woke Tuesday am I knew I needed help, I felt like I had run a marathon, I was so fatigued, the shower was so painful I could not stand it. Tuesday am the blood work was all negative. When walking I did not realize it but I kept tripping I had drop foot. I starting making phone calls to my doctor. I was able to coordinate a replacement for my conference I was running and I drove home Wednesday. I was to see the doctor on Thursday morning. Thursday morning I woke up I could barely walk from one room to another. I had to sit down in between to stop and rest. I just wanted to sleep. My husband had to go into the office that morning so I drove myself to the doctor. By the time I was almost there I realized that was very, very stupid!!! I could barely drive. The doctor took one look and said I would like you to go straight to the ER and get a spinal tap and mentioned Guillain-Barre Syndrome. My husband came and we went to the ER.

In the ER the ER doctor wanted to send me home. He said I could get a spinal tap in outpatient with the Neurologist office next week, that it was dangerous to do in the ER etc.. I explained I was not leaving until I did what my doctor told me to do (orders in my hand). He explained that after the CT he did not feel it was necessary and GBS was so rare. I asked him who would be treating me if I had GBS, he indicated a neurologist. I politely told him he and my primary care disagreed and I would feel more comfortable if the person who decided this was the person who would be treating me if I had the disease. So, he paged a neurologist to come down. Well, long story short, I was admitted, spinal tap was positive. Started IVIg that night and stayed in transitional ICU for 5 days getting IVIg. Luckily for me I just had deep tendon reflex loss, numbness from knee and elbow down.

Today, just very frustrated! Numbness went away, fatigue is a little better. However, the tingling 24/7 and nerve pain is just unbearable some days. I am in physical therapy, I work, I have a young child, and I just joined a gym. Everyone says to me walking and working out makes you feel better. I don't know.... somedays are just hard.

2

Hi there, I was diagnosed one month after you… I was hositalized for nearly three months and was fully paralysed… I was expected to make a full recovery within two years… But I still cannot feel the ends of my hands and feet and I have daily acute discomfort in my legs and spasms in them, my arms and my buttocks when I get tired. Get strange bodily twitching and I lisp too when tired. I also get very fatigued (particularly when stressed) and lose my temper a lot because of the constant underlying pain niggling away at me. I also strangely get fuzzy, cloudy vision when I’m very fatigued.

I’ve
been told working out will help too but I think some people just don’t understand how painful it can be.

Also, it’s not like a cold or a physical condition that they can see… Nerve pain is soo hard to describe to people.

3

Yes, it is... It is so hard to explain. Most times I do not even try but lately I am tired of trying to keep it all together all the time. I have sort of hit a wall with this, and I am no longer going to do this anymore.... I have emailed some of the best and everyone tells me exercise is good. I am looking into medication for pain now, and trying to get a clear answer on IVIg infusion therapy like people with CIDP get.

4

I had ivig, twice, because I relapsed…
It’s strong stuff

I now take prebgabulin at night and carbamazepine in the day

Interested to hear how other people find them

I can’t keep it together all the time - don’t beat yourself up about it :slight_smile:

5

I am scared of Lyrica. I don't know why!!! I tried Gabapentin - not for me!

Wow, you had a relapse!? I am so surprised it is so rare. I am sorry.

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I know, that’s what the doctors said as well, that is is rare.
I relapsed about a month after coming home and during my bed care. My face started to sag again and became paralysed which is how they new it was spreading back up my body. So went straight back and had another five day course of Ivig

They very nearly killed me accidentally the first time I had it as I was given too much too quickly - a malfunction of the machine. And my blood pressure dropped and I blacked out for about three minutes they said. I awoke to everyone crying - very strange day that was.

Lyrics is pretty intense - I only take at night because it has heavy effects on me… Vision stability and coordination decrease when on it… But when I am in intense pain at night, it’s the perfect antidote. I know that it makes me depressed as well tho if I take too much

I haven’t tried gabapentin - a gd friend of mine has it for her MS… But carbamazepine is the frequent drug I take. And I take a lot…:frowning:
Have you tried it?
And why were you scared of lyrica?
J

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I emailed Dr today we will start with Topamax this soon :slight_smile: wish me luck!!

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Gd luck!

9

Glad to hear you were finally diagnosed in spite of the obstacles placed in your way. Welcome to the world that is GBS. Unfortunately, it doesn't end when the acute phase is done.

You are now approx. 15 mos out from having had GBS. An educated guess says you sustained nerve damage from the GBS even with IVIG treatment.

Unfortunately, it is normal to have symptom fluctuations. Sounds like you have a LOT on your plate as well, esp childcare let alone being able to/having to work.

First and foremost, what does your current NEURO have to say re: your status right now? If you are his first ever GBS patient, you need to go online and try to find a Neuro with the experience level that a patient who has had GBS requires.

PT is a common response and yes, it might be needed for far longer than you ever thought. I would encourage you to check out POOL PT as opposed to Land based PT given your stated pain issues- being in warm water (and yes, Pool PT = PT in Warm Water) is soothing, it allows you to float or do exercises as directed in the deep end that is not weight bearing and may be far easier for you to tolerate. If there are Pool based exercise classes anywhere near where you live, no harm in checking it out.

Do realize, GBS doesn't have a Short Time Span re: Recovery. GBS causes Nerve damage that in turn can mess up signals to/from your brain to allow you to be as active as you would like to be once again. I hesitate endorsing your participation in a regular Gym these days because a Gym membership is more for people who didn't end up having nerve damage and/or residuals from GBS. As much as you want to feel better and seem/be normal, that isn't usually how GBS works unless you were lucky enough to have had a really Mild case with very little down time as a result. You are working, you have child care responsibilities, you are I assume going to a Gym to "Work Out". All of that may just be too much for you to tolerate in addition to having to do Activities of Daily Living.

Only you can know your own body. You are more than 1 yr out from GBS so you must have some sense as to what you can and can't tolerate most days.

GBS means there is a far greater need for rest and to pace yourself much better. While you need to be active for muscle strength, you do NOT need to walk a few miles/wk or work out in a gym setting (whether taking a specific class there or using the treadmill, the bike and whatever other equipment you want to use or were instructed to use) multiple days per week + take care of your household, run after a child, work full or part time with deadline specific tasks that may or may not require travel.

Just as you had to insist on being seen by a Neuro in the ER , you also need to be Followed by a Neuro Now if you aren't already, preferably someone who has had a GBS patient before. That person can be an invaluable source of info for you re: what to expect short and long term, come up with suggestions to try etc. That's something your current MD might not be knowledgable enough to address, esp if he/she has never had a Patient who has had GBS.

GBS is not fun. Fluctuations in various physical abilities are Normal and you need to pace yourself appropriately. You Will feel more tired now versus what you were like prior to ever having the GBS. Like everyone, you need to keep a roof over your head and food on the table for you, your child and anyone else in your household. You need to clean up the house, do laundry, go buy food, vacuum etc etc etc. All the things you did automatically pre GBS that I bet some days are a real physical pain for you. The Fluctuations, while annoying as they are impossible to predict and plan for, are normal post GBS. It just requires better management.

Your body will tell you what it can and can't handle each day. It is mistake to over extend in a desire to get back to the way things used to be prior to the GBS hitting you. Don't fight it. Listen to it. Plan out your activities so you aren't a whirling dervish because dollars to donuts your body will let you know in no uncertain terms when you have exceeded your energy and focus limits on any given day. Don't try to Push Trhu just for the sake of. The only person you hurt, literally, is yourself.

Slow down. Easy to say, hard to do- I know. Back off on the frequency of heading to the GYM. Get off your feet more. Listen when your body says it is too tired or approaching max overload far sooner than it ever did before.

GBS can be managed but it requires you to listen to what your body says to you. Some days will be better than others. Accept whatever help is available to you, esp pertaining to childcare. Slow Down. The world will still be there, twirling away, tomorrow.

Take a Deep Breath. Slow Down. Plan your activities better. Don't feel compelled to maximize your Gym membership. Nothing wrong with walking but start off Very S-L-0-W-L-Y and build up very gradually. If your feet tingle 24/7 and you have "unbearable" nerve pain some days, think back to what you were doing and how many hours were you on your feet.

Numbness and tingling in your feet isn't an uncommon finding post GBS. I am 7 yrs out and I still don't have full feeling in my feet. My pain isn't in my feet but throughout my spine from my neck right down to my buns. I had to learn to accept the limitations that actually meant for me and adjust my standing activities accordingly. Pain is pain, period. All the more reason to see a Neuro periodically for suggestions, get updates, and perhaps medication recs that aren't going to snow you under to the point it isn't safe to drive (or, be responsible for your child and his/her safety in your home).

Take care of yourself first; everything else will follow.

Best wishes and I hope you can be Kinder to Yourself (you are worth it!).

LJ

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10

Hi,

While I am glad you got through the worst of the GBS as it happened, the more challenging aspect is living to live with GBS after the acute part of it is done.

You are now 15 mos post GBS. Given the tingling you ID you have 24/7 and the Nerve pain that you categorize as "unbearable" some days, I would say you more likely than not have ended up with some measure of Nerve Damage caused by the GBS. Sadly, that is more common than not.

PT is a normal response post GBS and yes, you may find yourself requiring it periodically moving forward. I would like to encourage you for try Pool based PT. Why? Because it is done in heated water which is very soothing, exercises can be done on a Non Weight Bearing basis so there's less stress on your feet and other joints in the body. At the GYM where you signed on, is there a Pool there? If so, get in it and do some laps. Float. Take the weight off your feet and joints at the same time.

DON'T use the Gym to run indoors, walk on an inclined treadmill or use equipment a zillion other sweaty people also use. Sit on a bike and see how your feet tolerate pedaling, Don't sign up for a vigorous work out class- you more likely than not won't be able to tolerate that level. Jumping up and down isn't a good idea right now either- think of the jarring impact that has on your feet and just about every other joint in your body. There's working out and there's working out. You need to start off SLOWLY and not do too many reps until you see what effect that has on your body- the next day.

GBS means having residual Nerve Damage more often than not. I can't say if you do or not but if you have nerve pain and tingling I suspect you do. Welcome to the club as this is a common thing to have. Not that its reassuring to hear, Residual Damage is common post GBS. It can be managed BUT you must listen to what your body tells you it can tolerate on any given day. You also have to learn to Pace Yourself.

Keep in mind you have a child to be responsible and care for. You will have Activities of Daily Living that you may be responsible for doing on your own. Things like Household Cleaning, Laundry, Getting Groceries in, Paying bills, Vacuuming and Dusting, Making beds, Childcare responsibilities incl picking up your child literally, Pet Care ... you get the drift. All of those things take physical energy and joint/ strength movements by you to do.

Fatigue is more common post GBS. Its important to get enough sleep each night. What you got away with when having to meet any deadlines pre GBS will come back to bite you post GBS if you try to do so at the same level. You need to eat, you need to keep your hydration level up (post GBS issues do worsen when you don't eat or drink enough water) and you need to get enough sleep as that is the time when the body does a Re-Set to get you ready for the next day's activities and responsibilities.

Yes, walking is good for you. Just not a lot of it and not done all at once. Every day. At 15 mos post GBS you have to have some sense as to what you can tolerate and for how long. PACE YOURSELF. If you don't your body will tell you in no uncertain terms you Over Did It and will make you pay, physically. With Childcare, Work/Travel & Household Responsibilities I'd say you had enough of a full plate without adding activities that wear you out as well.

I can't emphasize enough how important it is to have periodic follow up services with a Neurologist who has already had a patient that has had GBS . He/She can be a valuable source of info, suggestions etc. He/She also will want to keep an eye on your system fluctuations too. Just as you had to push to be seen by a Neuro in that ER, so too do you need to have follow up locally with a Neuro who has a working knowledge of having diagnosed/evaluated/treated a GBS patient before. He/she can tell you if what you notice is "normal" or cause for concern. He/She is an invaluable part of your healthcare team. A Neuro who has never taken care of a patient who has had GBS may not be able to ID the more subtle signs or spot problems in patients that have had GBS- esp when things flare up or seem like they are.

I hope the above is of some help for you. I assure you, you ARE worth any effort it takes to regain any measure of improvement. You got thru the Acute phase. Now, you have to learn how to better balance the Chronic phase that is having had GBS in the first place. It can be done. Don't hesitate reaching out. Don't compare what your life was like prior to the GBS against the challenges that is living with it after the Acute part is long done.

Best wishes to you!

11

Thank you for your input.

My neurologist is very good and a ton of experience with GBS. I was going every 3 mos, now because I started PT and had a good setback he has me coming every 6 weeks. I tried Effexor for the tingling and nerve pain. It worked great for 4 days until I lost my distance vision. Tried Gabapentin again and was a trainwreck. Then tried Elavil and it did little help but then 7 days later again distance vision impaired.

I am currently not able to take anything.

I am just having a rough beginning of the year.

We are looking into building a heated pool at home. The gym does have a therapy pool and other pools. I have yet to make the gym yet. But will try just bicycle when I do. I travel a ton in the spring and we also have 5 acres to care and maintain at home.

Some weeks I am great at balancing and resting. Other weeks it just isn’t possible sometimes. I need to get in a better schedule for myself and I am still trying to sort it all out.

It also hasn’t helped that my daughter had pink eye and stomach flu… I am just getting over stomach flu also. That took me down hard.

12

Berries

You are doing incredibly well, all things considered. Everyday life takes a lot of strength and energy. It is a balancing act under the best of circumstances, add GBS and you have quite a juggling act going.

It can be hard to be patient during rehab, we all want to get back to as many activities as possible, as quickly as possible, but overdoing it can really take its toll. It sounds like you have found a good doctor, that's important. Good PT is another. They will both help you move forward safely. Listen to their advice and to your body. Take it slow and steady. Each day will be different, take them as they come.

When my kids were little, there were days that I counted as victories if I got dressed, everyone got to school and back, and had all three meals. Most days were a lot better than that, but you can't beat yourself up when they're not.

Stay positive, cut yourself the slack you would give to others and give yourself permission to just make it through the day every once in a while. It will get better!

13

Hi, This is Berbalinda; I just joined the GBS Support a few days ago. I was diagnosed in Sep 2015 and was unable to tolerate Gabapentin. I couldn't try Lyrica because of the cost $300.00 a month, so I didn't even try it. Now I'm taking Cymbalata, I had no pain until the last couple of weeks, mainly my problem is the balance and fatigue. I bought a stationary bike to try to keep my muscles stronger in my legs. My neuro suggested ankle supports and I've been wearing them, when I don't, my ankles swell. I've had a hard time with my neuro, he has given me absolutely no guidelines about GBS and I didn't believe I had it, but I've had 4 MRIs to rule out other problems and that plus a blood test for West Nile virus all came back negative, so I'm starting to believe I do have GBS, but I need a new doctor that will talk to me and not be arrogant with me. I'm 67 years old, and trying to lead an active life, not feel like this will cause my demise and get worse. I would welcome any input or helpful information and friendship of someone that has gotten better. Please respond back to me.

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Hi Bergalinda,

First things first: What type of MD diagnosed you with GBS, when and with what type? Your comment says you didn't believe you had GBS but are now are starting to believe you have GBS or had it???????

There are 3 main types: a) Acute variant - AIDP b) Chronic variant- CIDP c) Miller Fisher variant.

Of the 3, only the Miller Fisher GBS variant has any specific Lab test that can offer a more likely than not diagnostic certainty for GBS. The other 2 don't such that it requires a qualified MD to be able to sort out the presenting symptoms, the degree of incapacitation you had and how quickly same happened from onset of having any symptoms at all.

Except for Miller Fisher variant, the other 2 types need to be carefully looked at diagnostically. The 1 and only local Neuro that would even see me , twice in 5 days during which time I was seen in the ER x2 for really severe neck pain (that is a cardinal presenting sign for some people), told me I had Fibromyalgia of all things and directed me to go find a Rheumatologist for any treatment, assuming there was any at all who didn't have a many months wait to see any New Patients. I have enough of a health care background to know my problem was definitely Neurologic, not Rheumatologic. Unfortunately, I couldn't find any local Neuro's willing to take my case and believe me I tried repeatedly, making many many phone calls while I was still able to dial a phone number.

GBS is Uncommon/Rare. As such, it is a challenge to diagnose timely let alone diagnose correctly. Once symptoms begin the escalation of the symptoms can be like a runaway train with functional loss extremely rapid (same day) or rapid ( over the course of < 1 wk). All can be very to profoundly to life threateningly incapacitating. Current standards still indicate Treatment usually has to begin within 7 to , some say, a max of 14 days after the initial symptoms first show up to try to prevent or minimize the degree of damage GBS can cause on the nerve pathways and muscle groups in the body.

Per your response, sounds like you have seen a Neuro but he's proving to be of no help to you.. On the other hand, there are all sorts of Neuromuscular conditions and conditions that can also result in Balance issues and Fatigue. If there is any doubt as to your diagnosis you need to pursue that first by getting to an MD specialist who can figure out what happened/ is happening before any form of treatment response can be identified.

If in fact an MD did inform you that you have or had GBS, was it this same Neuro who seems to be of no help to you now?

Balance and Fatigue by itself don't confirm GBS. Those 2 things could be signs of a lot of other conditions. If the Neuro you currently have have has Not said you have GBS, what did he say you have that he is supposed to be treating you for?

If you, like me, had to weather the firestorm that is GBS on your own because it wasn't correctly medically diagnosed in the first place or done far to late to have had any chance to try 1 of the 2 known IV treatments for it in the timeframe already identified,there's still no harm in finding another Neuro to retrospectively hear you out (as in listen to you ID your own history), examine you for any signs of nerve/muscle damage you may currently have and then from there make appropriate supportive treatment recommendations.

Depending on you health ins, this may require you to be referred via your Primary Care MD (who by the way also needs to examine you if he/she wasn't involved when any symptoms you had first popped up on your radar) for approval by the Medical Group or IPA you are with. If you don't have this type of ins, have your Primary give you names of Neuro's he is aware of/his other patients see for similar symptoms or conditions you are having. Go online - Check out Neuro's for your particular County or City and see what pops up. Get your dialing finger ready and call the Neuro offices. Without getting too detailed, tell them what your Diagnosis is or might be and/or current symptoms and politely push for an appointment sooner rather than later.

You must also know the Hospital facilities in the community where you live as well-- call and ask for a list of Neuro's who see patients there then look them up by name online too. Like any other specialty, some Neuro's have subspecialties as well so ask the medical offices during the call if the MD has any. Assuming you have or had some type of GBS, say you are a GBS patient and need someone who has other GBS patients or treated people with it. Also, look up any large teaching hospitals near where you live. Call and get some names of Neuro's who admit patients there.

Sorry if this isn't what you were looking for but I confess I am confused after reading your posting as to whether or not you had GBS and if so, what type. No matter what, an unresponsive disinterested MD of any kind is a waste of Your Time and you need to move on to find someone isn't.

Best wishes!