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Living with Polyneuropathy CIDP, GBS, & CMT

Mild form of GBS


#1

Hello everybody,

First of all: my excuses for my english, I'm Dutch so I can't speak or write in English very well.

I'm new on this forum and looking for some mental support and information :)

4 weeks ago it started with me and after some tests they thought I might have GBS. They kept me in hospital for just 3 nights because they think I have a mild form. I can still walk a bit and do not have problems breathing, I cannot walk for long distances though and have some problems with using my hands and fingers.

3 weeks ago i had my first EMG and today the second one. I thought i was making progress because walking is easy every day. Weird enough the second EMG says I'm going backwards, can anyone give me some explanation for this? The doctor was not really surprised.

Is there anyone else who had a mild form and can give me some more info about the recovery.

Thank you for reading this


#2

How are you doing daan? I just saw your post from a couple of months ago. I had what was believed to be a mild form about 17 months ago. I had my first EMG in the first week that I had trouble and it was normal. While the Neurologist was doing it, he said that the first week is oftentimes too early to show and he didn't even think that it should have been ordered yet on me. Bad thing is that by the time I could actually be seen by the Neurologist and get another EMG, I was doing much better and that result was normal too. I was hospitalized twice before I could be officially seen by an outpatient Neurologist. I am so much better now and doing much of what I was previously. Endurance has been the slowest recovery for me but it has improved tremendously. I don't know if I will ever not be able to tell that I had this. Hope your endurance is better now and you are doing well!


#3

Hi! sorry for the late respons. Great to hear you are recovering, is your endurance still recovering after 17 months?

I am doing much better than when i wrote my first discussion. I sometimes am afraid my endurance is not improving anymore, takes such a long time to improve so i dont notice the difference anymore. Though if i compare with 3/4 months ago: im doing much better.


#4

Hi daan! Great to hear you are doing better! My endurance does seem to be improving. I sleep so much better now. I used to hurt so bad at night but now I'm not experiencing any pain or stiffness. Hopefully your endurance will get better.


#5

Hi Tarhealing!,

How is your development? Im fully recovered and back working, going to the gym and having fun in life again :).
Hope you will recover as well…


#6

Hey Dean. I was also considered mild was in wheelchait few ths but mostly recoverwd now been 19 months for me. I had terrible muscle twitches they are not as often now but every once in while I will get a constant on on my thumb or toe for a day but it goes away. How about you? Exercise has Been a key component of my recovery along with supplements alpha lipoic acid vit d3 since I was a 12 on the vitamin d test.