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Living with Polyneuropathy CIDP, GBS, & CMT

About the New Member Check In category


#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you


#2

I am a 65-year-old male.

I was diagnosed GBS on October 7, 2016, 2 days after my first symptoms (inability to button buttons, then to clasp a clasp, then difficulty maintaining balance when walking up one step). I was admitted to Mt. Sinai hospital the same day, and began IV IG infusions that evening (5 in total). I was discharged after 6 days, having never experienced pulmonary distress, difficulty with my tongue or swallowing, or loss of muscular control in my feet. My thighs and hamstrings were weak, my upper arms as well, and I had lost most strength in my wrists, and the ability to extend any of my fingers. (Also have lost about 25 pounds since the beginning of symptoms – a silver lining, that has also allowed me to get my blood sugar level under control)

I was pushed in a wheelchair for 2 days, then graduated to a walker, which I used for 9 weeks. I began working with both a physical and an occupational therapist. A succession of small gains, including ability to climb and descend stairs, often without touching the banister. I am working to get off the ground without having to hold onto our person or a vertical surface. My gait has returned to 98% of norm, and my pace is picking up as well, but I have not tried jogging, even on a treadmill as yet. I am able to stand up from progressively lower seats, including the toilet seat, without using my hands.

I have begun working out with weights for my arms, including a pair of 2 pound wrist wraparounds and 1, 2 and 3 pound weights. My problem with my wrists preclude me from from trying anything heavier – the wrist will flop. None of my fingers extend yet, greatly limiting my productivity. However, I began using Nuance’s Dragon Naturally Speaking software (version 13 – because it was cheaper), allowing me to dictate this and more complex documents (and correct them using verbal commands), as well as spreadsheets and surfing the web. I am so pleased with it, I may not go back to typing if/when I regain full use of my fingers.

I just saw my neurologist (he who diagnosed GBS within 10 minutes and who contacted the neurology team in the emergency room to expect me). Although 5 months have gone by without change in the fingers, my wrists are slightly stronger and he has not changed his original prognosis of “full recovery in weeks to months”. I am scheduled for an EMG in 10 days which may help in further assessment.

I have stopped driving for now, and would not travel on a train or plane by myself (I can’t lift luggage), but have done so in the company of my supportive wife. I have given up playing bridge since I can’t hold 13 cards in my hand nor easily pick one card out. I have cut back on visits to OT because the muscles are simply not innervated. I am about to move from PT to fitness training at the gym, to build a greater thigh core and upper arm strength (I will need help to adjust the apparatus).

I would love to hear from anyone who has experienced GBS with loss of hand function, whether they have recovered from it in toto, partially, or not at all.


#3

Hi, my name is Pete, firstly I’d like to thank all of you for your contribution to an amazing site and what appears to be a wonderful community. :kissing_heart:
Finally been diagnosed with “mild” CIDP, 42 yrs old, based in UK.
After reading many of your posts it baffles me how this is still rare. It was very scary for me at first, I’m just getting used to living with it, but reading your comments from the outside was so helpful, I sympathise with everyone here and I send you heartfelt appreciation of your kindness and openness to share your experiences.

Already a huge thank you! :grin:


#4

Hi, My name is Alice. This illness is really a strange one, I am constantly reading but nothing makes sense. I am 54 years old, I noticed I had a problem in December 2015 because I had a trip and fall on 2 consecutive days. The weakness on my right foot, then the drop foot and wasting of entire right leg. I went to see a neurologist in early 2016, I had 3 different medical opinions since then. I had x3 MRI, x2 Lumber puncture, all the blood tests - the screening tests all normal. The only abnormality found was in the nerve conduction. I was admitted twice given steroids(solu-medrol) with no improvement. My neurologist say it difficult to diagnose and from clinical presentation it most likely CIDP.

Thanks to Ben’s Friends; I can now hear from others if this condition is what it is.
I would like to hear from anyone that had a successful outcome from the recommended treatment. I am ready to try anything well before the end of this year.


#5

Hi Alice.I’m new here too, took me around 4 years to be diagnosed, very scary and traumatic for me and my family.
Did all the tests, awkward as they are, but now at least I know what’s wrong, big weight lifted!
When I have the time I do yoga and use a pain gone pen on those electric nerve blasts that happen, not sure if this would help you, but I guess, as you’re here, like me you want some kind of solution.
Hope this is anyway helpful and welcome to the website.
Best regards, Pete


#6

Hi Pete
Thanks for the support and advice, I am willing to try anything. :weary:
Hope we wake up one morning and “this thing” is gone.