Newly Diagnosed "Mild" GBS
October 15, 2017 at 3:00 pm
My neurologist recently diagnosed me as having a mild case of GBS. It started about two weeks after a cold, with numbness in my toes, followed by numbness in my fingertips the next day. So far at week 5, the numbness has decreased in intensity and frequency, but tingling and pain has spread into my arms and legs (mostly the knees, elbows and shoulders at present, though it comes and goes). We’re monitoring it closely but so far the neurologist has been inclined to let it run its course (unless we see any deterioration in my condition). I’ve seen very little information on anyone getting through this without going through some kind of treatment or without experiencing an escalation of symptoms (including at least temporary paralysis) so I’m curious about other experiences with “mild” GBS. Is there a plateau point that I should watch for? If it doesn’t escalate, is there a normal time frame in which it runs its course? I’ve seen estimates of 8 weeks to 6 months. Any information will be greatly appreciated! Thank you!
October 15, 2017 at 6:20 pm
My first neuro made the distinction being 8 weeks. If it went beyond that we were probably looking at CIDP and less than that GBS. Of course everyone can be different but those were the general guidelines they told me.
October 15, 2017 at 8:03 pm
To clarify, GBS will peak in less than eight weeks, typically about four. Recovery will take much longer, from one to three years to reach maximum recovery.
October 24, 2017 at 8:27 am
I had what I would say was a mild case however my symptoms did escalate to the point of hospitalization and IVIG treatment. I was mostly recovered when I left the hospital 6 days after admission, a week and a half from the start of symptoms. I followed up with my neuro a month later and she did an EMG, which she said showed my nerves were completely healed and did not indicate CIDP.
I would push for an EMG, maybe that would provide more info for you.
November 8, 2017 at 10:19 am
I am about 4 weeks out. I have only had a bout of bladder retention for 13 days (had to self cath) complete numbness in my saddle/pelvic/anal area, 3 fingers on my right hand are numb at the top, right leg and foot and left foot are numb. Two weeks ago I received on round of IvIg in the hospital. I am awaiting for home infusion therapy to continue IvIg. My doctor is still saying AIDP and interchangeable axonal sensory gbs. She does not think my symptoms will progress b/c they would have by now. I feel grateful to just having this degree of symptoms. I would ask for at least a round of Ivig. It cannot not hurt!
December 18, 2017 at 6:25 am
Hi, I have been diagnosed with a mild case of GBS I was diagnosed 1 week ago and symptoms started 2 weeks ago, starting with parastheasea in my hands. The neurologist was not concerned and said if it spread into the wrists or ankles to return. I have since had mild numbness in my feet, but this sensation went away and then became sore. The parasthesea in my hands became less like pins and needles and more stiff and swollen. I am unsure weather I should return to the neurologist, it is rather expensive and I feel like if its a mild case that will just go away its a waste of time and money. My symptoms:
I have roaming pain and stiffness (burning sensation) in my joints (ankles, knees, wrists),
A slightly numb sensation below the knees,
Roaming numbness in the feet,
Pain in the upper arms (worse at night). Stiffness in the wrists, twitchy thumb, sometimes other fingers but only on the right (dominant) hand.
Numbness in the hands comes and goes, and feels more painful in the finger joints.
Crawling skin over all limbs and torso also comes and goes.
All of these symptoms are relatively mild and come and go. Should I return to the neurologist or just sit it out for a couple weeks more and see how things progress?
December 19, 2017 at 3:34 pm
I was also diagnosed with mild GBS. Three months later, I still have weakness in my legs, especially upper thighs, where it attacked first. Is the GBS still there or is this muscle / nerve damage?
December 19, 2017 at 7:36 pm
wreek, when GBS is active, it is attacking your nerves, leading to progressive weakness. When it is no longer active, your nerves should be healing but there may be residual nerve damage which can cause weakness.
December 19, 2017 at 8:05 pm
Hi all, here’s an update (102 days after the symptoms started)– the progression was slow and there was concern that it might be CIDP, but at two months the neurologist saw improvements in my nerve responses (almost entirely back to normal) and another month later continues to see improvement in my reflexes. I’ve been fully mobile the entire time but still am experiencing mild nerve pain and numbness, though the intensity and frequency has decreased significantly. Still having some weakness at times as well. It’s been frustrating (and stressful) in that it hasn’t followed the typical GBS progression but the neurologist expects me to make a full recovery, though she expects me to exhibit symptoms for another month or two. @Matt, it’s definitely a good idea to stay in touch with your neurologist; however, in my case, we’re just letting it run its course so the doctor hasn’t done much other than provide peace of mind. However, they might prescribe some medicine for the nerve pain if it gets bad so keep that in mind. Good luck!
December 20, 2017 at 12:55 am
Oh? it’s still active? Some days, I feel OK, other days weaker. Like it comes and goes. If I’m tired, I really feel the weakness in the legs. I guess this stuff never really goes away.
December 20, 2017 at 12:57 am
From reading other comments, maybe it just has to run it’s course. It’s been around 16 weeks.
December 21, 2017 at 2:46 am
Thank you @LouLad for the response. I decided I would see my Neurologist in the new year, unless things get dramatically worse I will just go the ER. I actually think the worst part of this all is the uncertainty and the progression of symptoms can be quite terrifying. I’m trying to keep calm and just wait patiently. Only week 2 🙁 and symptoms much worse, hopefully will start recovering soon instead of getting worse. Still very lucky to have only a mild case, I am mobile at least even if some days its hard to lift my feet off the ground. Hope you all have a good rest over the holidays and feel better in the new year.
@wreek I find if I don’t sleep well I am so much worse. My neurologist said up to 3 months, but from reading this forum it seems it can take a year or more even in mild cases.
December 23, 2017 at 4:57 pm
GBS diagnosed in 2008 with immediate treatment: IVIG/plasmapheresis, intensive care and lengthy inpatient therapy in a NeuroRehabilitation facility. Present date (2017): I have continued to practice a healthy diet, embrace a positive mental outlook, and go to yearly follow up visits with a neurologist who is well versed in GBS/CIDP treatment. Avoidance of stress and adequate rest are invaluable tools. Aquatic therapy has been the most beneficial therapy for my body and mind. I’m not a swimmer as I sink like a rock BUT flopping around in a pool has been fun and physically rewarding. Find a community pool and get a membership if you don’t have access to a private pool. Initially my health insurance provided me with a benefit of receiving therapy in an approved aquatic facility. Above all, stay in touch with the GBS/CIDP Foundation. It is an amazing resource with caring individuals willing to provide information to patients and caregivers impacted by GBS/CIDP and variants.
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