Lucky is the word

This topic contains 7 replies, has 3 voices, and was last updated by  nucciberger 1 month, 2 weeks ago.

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  • #113356

    nucciberger
    Participant

    I’m 32 mother of two little kiddos that was just diagnosed with GBS in August 2017. Along the journey, I’ve had countless people tell me how lucky I am. After reading stories of others with GBS, I’ve learned just how lucky I am. I received an early diagnosis and start of IVIG and it makes me wonder if that is why I recovered so quickly. Does anyone have the same experience?

    Here’s my story:
    August 4, 2017, I started with the worst stomach bug with diarrhea I’ve ever had in my life which lasted about 2 days.
    August 12, 2017, I started feeling tingling in my toes and fingers and feeling like my leg was falling asleep when walking. My dinner time that day, I couldn’t taste the food I was eating because my tongue started going numb.
    August 13, 2017, the tingling worsened so I went to the ER. They ruled out stroke and said it’s probably related to my stomach virus I had. Sent me home, told me to get some exercise. Later that day, I started having balance issues when walking, and pain in my hamstring area.
    August 14, 2017, followed up with my primary doctor. By then, I had severe back and neck pain, tingling/numbness all over my skin, worsened leg pain and balance issues. Suspected MS and recommended an MRI and neurologist follow up. They told me to call with new symptoms.
    August 15, 2017, I called back to my primary doctor, with worsened pain, balance, and tingling. Having trouble walking up steps at this point. They moved my neurologist appt to the next day
    August 16, 2017, same symptoms just worse. By this point, I had to use my pant leg to lift my legs in my car and I had to hold on to something when walking. Balance is way off. Saw the neurologist. He suspected MS or GBS and ordered an EMG and MRI.
    August 17, 2017, woke up with heavy feeling arms, inability to control my bladder, and lump in my throat feeling. Called the neurologist, he recommended going to the ER. ER doctor immediately suspected GBS. Consult with neurologist who suspected the same thing and ICU doctor to evaluate me. Had a spinal tap completed and they were waiting on the results before starting IVIG. Admitted to the hospital.
    August 18, 2017, woke up with the left side of my face paralyzed. All other symptoms the same. IVIG was started.
    August 19, 2017, woke up with the left side of my face even worse – difficulty eating, drinking, speaking, and couldn’t close my eye.
    August 20, 2017, during second IVIG treatment, the tingling in my hands and feet started feeling different, like my hands were warming up. My legs were beginning to feel lighter and easier to move.
    I finished my IVIG course of treatment and was released from the hospital after the 5th dose (6 days in the hospital). I had massive headaches during the IVIG treatments and for about a week afterwards. By the time I was released, I was able to move much easier, able to walk steps, etc.

    Fast forward one month, I had an EMG with my neurologist to get a baseline in case of reoccurrence or CIDP. She said my nerves are completely healed. I have some remaining tingling in my fingers and toes and I’m still having issues with my eyes but all of my other symptoms are gone.

    #113358

    GH
    Participant

    Yes, earlier treatment generally leads to better recovery, but in a particular case one never knows how it would have turned out with different treatment.

    I’m surprised your neurologist didn’t put you in hospital right away instead of waiting a day. I had just one office visit, during which my neuro said “I’m putting you in the hospital.” I replied “Really? When?” He said “Right now.”

    Was your GI distress related to some particular food that you remember? What was it?

    #113359

    nucciberger
    Participant

    My neurologist “really wanted” for me to get the EMG, which they only do in the doctor’s offices around here. Those tests aren’t done in the hospital. I really wish they would have just put me there right away.
    As far as the GI issues, my whole family seemed to have the bug. It hit myself and my 1 year old son the hardest. We do not think that it was food related however.

    #113363

    GH
    Participant

    The EMG explanation is odd, becaus neurologists can take equipment for EMG (and NCV) into the hospital to test a patient. I had both tests in hospital performed by my neurologist, not hospital staff.

    The whole family getting sick does suggest food poisoning, but there are other ways that Campylobacter can be transmitted:

    https://www.cdc.gov/campylobacter/index.html

    Campylobacter jejuni is known to be a trigger for GBS.

    #113387

    Cassie..
    Participant

    Hi!! Yes I had a very similar experience to you, and was even diagnosed in August 2017 as well. I completely agree with you, and consider myself to be extremely lucky as well! I have no residual tingling or sensory disturbance, but still quite weak in the legs and left arm particularly (compared to my normal), and struggle with fatigue, muscle tightness and a bit of muscular pain, especially if I “overdo it” (I am still working out what “overdoing it” actually means, especially because it seems to be different on different days). Otherwise I am going so well! Walking well in general, fully functionally independent and mentally great (except my short term memory has been off since I was in hospital… not sure if that’s a product of the GBS or fatigue). I am actually a physiotherapy student so, through the whole ordeal, I have learned a great deal about neurology, neuro rehab, what it’s like to be on the other side of health care (having never been in hospital before as a patient), and what it’s like to have a neurological condition that is very relevant to my future profession. I think the whole experience will make me more empathetic to my patients (regardless of their condition/injury) and make me a better physio for it. Anyway this is how it all happened for me:
    End of July: contracted the flu and a bad sinus infection. Apart from one instance when I had the flu as a child, it was probably the sickest I had ever felt. Kicked the flu over about a week and the sinus infection improved over a couple of weeks. Worked out and went running over this period probably a lot more than I should have.
    13 Aug: Ran City2Surf, a 14km fun run in Sydney, in decent time.
    16 Aug: developed tingling and muscle spasms in left foot, moving up the lower leg and started in the right foot.
    17 Aug: tingling increased in both legs and feet but the left was worse, left foot went numb, and tingling and pain started in hands and wrists. Went to GP that afternoon who said go to ED – ED doctors said “don’t know. Probably a weird response of your body to running a 14km up and down hills while still recovering from the flu/sinusitis”. Tingling became really painful that night and hardly could walk on left foot, so went back to ED, waited 6hrs to be seen (nurse said to my mum “to be completely honest, she doesn’t look that sick and there are lots of other people with more serious problems that need to be seen to”). ED doctor said same thing as previous dr and said to come back to hospital if things became worse.
    18-20 Aug: Tingling became a lot less painful (thankfully), but legs became really weak starting from feet and lower legs. They felt as heavy as concrete but my joints felt unstable like jelly at the same time (if that makes sense). Also had bad low back pain and neck pain. My hands were also getting weaker.
    Afternoon of 20 Aug: went back to hospital (different hospital… Mum brought me home, rural town 4 hrs away, from uni on 19 Aug). Could walk about 3 steps at this point. Assessed by dr who thought GBS was unlikely (more likely to be coming from my low back), but spoke to neurologist on the phone who said admit me and she would see me in the morning.
    21 Aug: Diagnosed with GBS by neurologist and started on IVIG that afternoon, with MRI to rule out MS to be conducted later on (all clear thankfully!). Could walk very short distances with walking stick, but couldn’t shower myself. Dad pushed me around the hospital grounds in a wheelchair every afternoon and did “donuts” (hopefully that is not an Aussie slang term… spun me around in the wheelchair) haha.
    On IVIG for 5 days, and started to improve a bit – could stand and walk short distances without the walking stick.
    25 Aug: discharged with my very own walking stick which I “bedazzled” with stickers.
    Couple of weeks later: Had follow-up nerve conduction study which showed peripheral demylination (resulting in latency and fatigue of nerve conduction) in my arms and legs (but legs much worse), exactly what you would expect for GBS, which will heal over time (not quickly though).
    Now: back doing full-time uni (actually didn’t miss out on any uni, because it happened during the holidays), work experience, driving, etc and seem to everyone else “completely normal”. Still not physically strong enough or have enough endurance to work at my waitressing/bartending job.
    Neurologist says it will probably take at least 6 months (from diagnosis) to feel completely back to normal. She also said that recovery from GBS seems to happen really fast until you are about 80% or so better, then it takes a much longer time to get the last 20% back (definitely seems that way with me). Also she said that often it goes in ups and downs, like you can be really really good (almost normal) one week, and then the next week it’s like you’ve gone 5 steps backward. But as long as you are still making progress, that is what’s important!
    So incredibly lucky to have recovered this well so far and continuing to do so. Everyone stay strong and stay positive!! Hope this helps.

    #113388

    GH
    Participant

    Cassie, did the Dr. who “thought GBS was unlikely” test for knee reflex? When I was just barely able to walk, my knee reflex was zero. At that point my Dr. referred me to a neurologist.

    #113390

    Cassie..
    Participant

    Hi GH, yes he did and my reflexes were actually preserved which was interesting because (like you) most people have diminished or absent reflexes with GBS. But the neurologist who I saw the next day said that GBS never occurs exactly as the medical textbooks say, and it is likely that a person with GBS will have most (not all) of the symptoms you would expect.

    #113439

    nucciberger
    Participant

    Glad to hear someone else has a similar case to myself. My only limitation left is tingling in my fingers and toes. The tingling forces me to stop exercising when I need to put my hands over my head or use weights. I need to take lots of breaks.
    It’s frustrating but I keep telling myself how it could be much worse.

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