GBS Recovery – Residuals, Sensitivities and possible CIDP?
September 12, 2015 at 5:40 am
I was recently diagnosed with GBS about a month ago. It took about 3 months to get diagnosed (the EMG study showed delayed nerve signals). At its worst my GBS was around stage 2-3, with the following symptoms:
– difficulty walking, unable to run or jog, climbing stairs extremely tiring.
– aches in the hamstrings, hips and lower back.
– tingling, numbness and irritation that spread from thumb to pinky, and then across the bottom of the hand.
– same pattern of tingling and numbness in both feet – central toes became very numb.
– poor reflexes in legs
– burning and pain in hands (from usage).
– other back pain: cervical spine and between spine and shoulder blade.
Sadly because of the delay in diagnosis, I was given no treatment. I am in the recovery phase now, but I am left with fluctuating symptoms, some that seem to come and go, and last 24 hours or more. Its probably better to report them along a time line:
Mid April-Mid May 2015:
– Acute attack of GBS occurs (see symptoms above)
Mid-May -> July 2015:
– diplopia (double vision) on left side.
– back pain.
– lower body aches (hamstrings and calfs, sometimes hips) that appear during afternoons.
– general feeling of uneasyness.
– malaise after exercise.
– hands and feet “numb out” after extended use, some feeling returns after a while…
– allodynia in feet from too much use.
– weight loss and sleep deprovation (anxiety)
– easy to fatigue (1 – 2 naps a day needed)
+ learned to walk properly (with a full stride, normal speed).
+ constant burning/tingling in hands went away; present in feet if I walk too much
+ diplopia subsides.
+ learned to do light jogging (sinking/jello feeling started to subside)
+ pain in feet goes down.
+ regained some strength from strength training.
+ able to function without napping.
– joint inflammation, moderate muscle pain after heavy exercise (delayed onset). Pain can last for 2 days or more.
– large fluctuations in blood pressure (anxiety and stress).
+ jogging steadily improves.
+ allodynia in feet mainly dissapears.
+ can feel tips and pads of fingers, toes again.
– panic attacks that feel like stage 2 GBS (weakness in legs and arms, tingling and numbness down legs arms hands and feet 🙁 ).
– numbness in toes/fingers can still occur from overuse
– ulnar and radial nerve irritations start to appear.
– skin on hands gets much more dry very easily.
+ can jog for longer periods, do light sprinting.
– difficulty sleeping (wide awake) maybe once a week.
– reflexes in legs (knees, ankles) still quite poor (closer to 0 than +1).
+ reflexes in arms low normal (+1)
– rarely, burning of feet at night (maybe once every 2 weeks)
– numbness in tips of fingers worst when I wake up (circulation/nerve irritation)?
+ afternoon aches in legs and hips reduced greatly (yoga seems to help with this).
– numbness in fingers from too much usage – this subsides somewhat if left to rest. This symptom has gotten worse over the last month.
– left foot still has excellent feeling; fast pain response in tips and pads of toes on right foot have become a bit dull (especially two smallest toes).
– muscles in right leg will sometimes seize up (when walking in shoes, or jogging too much)
– aches in elbows, ankles and finger joints (sporadically).
– random cold feelings and pain in tips of big toe, and top of foot (along the path of the big toe). This subsides after 20 minutes or so.
So, this leaves me a bit perplexed. My main questions are:
1) How long do GBS residuals last? Do different symptoms phase in an out over time (say a few days or a week) for others going through nerve regeneration and recovery?
2) Sensitivities: it seems my nerves are really the weakest link in my body now. Does anyone find that certain foods or drinks makes nerve symptoms worse?
3) Temporary Numbness, pain in hands and feet from using them too much? Does this happen to other people? Is it possible to exhaust recovering nerves?
4) If I do have CIDP, is it possible for it to switch to a purely sensory type after a remission period?
September 12, 2015 at 9:50 am
Wow, you’ve described all the things I’ve been going through! Although I’m not qualified to answer any of your questions I can say I don’t think there is any one pattern in this “syndrome” whether it is GBS or CIPD. My treatment was delayed as well (they originally back in Sept.2014 found a herniated disc in my neck and I now have a titanium brace in my neck) so I was not treated with IVIG until December 2014. I am now getting IVIG in home every six weeks. Because of the delay my neurologist says my recovery will take much longer, up to 3 years. I would suggest you make sure you have enough b vitamins, magnesium and vitamin d in your system as these are very important for nerve health. I took a walk on the beach yesterday and every day I feel good I try and push myself a bit. I am grateful for this forum which allows me to connect with all of you. Good Luck1
September 17, 2015 at 1:15 am
Hi Angels Abound. I’m glad you finally got diagnosed and are back on track! So you have experienced many of these symptoms as well? My main concern was residuals and joint pain that last 24 hours or more; did you ever have trouble like this? If so, it’s good to know I am not alone. Strangely, my neurologist did not prescribe me IVIG in my recovery. Did you get a second bout of GBS, or did CIDP come out of remission? All the best and speedy recovery!
September 12, 2015 at 2:26 pm
Generally, maximum or near-maximum recovery will be reached within three years. Residuals vary. While some will have a 100% recovery, others will have permanent residuals to varying degree, depending on the details of the nerve damage. It is not possible at this early state of recovery to know what your best recovery will be and when it will be reached. All you can do is work on your rehab day by day and hope for the best.
September 17, 2015 at 1:23 am
Hi GH. I’ve come to terms with the fact that it is possible I may have CIDP, and it’s too early to tell at this stage if an acute attack will come back. My symptoms seem to fluctuate a lot. I’ve decided to not test my symptoms every day (as this raises anxiety when I have a few days that are off), and do regular 2 week tests with my doctor to measure progress (including: 2pt touch discrimination, pro-prioception, deep tendon reflexes and vibration testing on feet). Over the next few months we’ll see how things progress. All the best!
September 18, 2015 at 9:47 am
Sounds like you have remarkable recovery. Can you share your treatment so far? I was diagnosed CIDP out. 2014, went through IVIg nov. and dec. 2014. No improvement, so my neurologist put me on pulsed dex for 6 months, still no significant improvement. Any suggestions?
Thank you, ru
You must be logged in to reply to this topic.