Hey, thought I’d update. I just got home from the hospital last month (3/19). What I was experiencing wasn’t RLS, it was my immune system attacking the myelin sheath that surrounds the nerves. It moved from my legs and arms into my eyes and my bladder, then finally to my chest. I was on a ventilator for 9 days in the ICU.
I’m doing better now, I’m just extremely lucky that my neurologist caught it in time and sent me to the hospital when he did. The condition that I actually have is called Guillain-Barré Syndrome. It’s an autoimmune disease that was triggered by a mononucleosis flare-up I had in late 2020. It makes the body attack its own peripheral nerves, hence the feelings I had been experiencing in my legs and arms.
I’m not trying to freak anyone out, GBS is extremely rare, but if your symptoms match up with any of this, have your neurologist do a spinal tap to test for the protein. It’s very fast-moving, so I doubt anyone that’s been experiencing RLS for a while is in danger. I just want this information to be there for someone in case they’re going through something similar.
Also, thank you to everyone who commented on my older posts with advice and/or concern. I really appreciate it!
Written by
mmjxc
To view profiles and participate in discussions please or .
Thanks for the update. And good to know you are doing better. Fortunately it came out that you have not RLS, but I am not sure at all whether the GBS is any better. At least I hope it is less debilitating on a daily basis and better treatable than RLS. Thanks for sharing your story. I was always interested and a bit concerned as you are still so young. I hope you can live a better life now! Lotte
No problem! I am fortunate in that sense, yes, but it is very debilitating if it gets bad enough. I’m actually unable to walk currently. They said it will take 6-9 months before I’ll have full mobility back. GBS is tricky. I’ve received 2 different treatments for it (IVIG and plasmapheresis). The IVIG made me delirious and have a seizure-like reaction. The plasmapheresis is what worked for me while I was still in the hospital and I’ll have to receive maintenance doses throughout my life to keep the GBS at bay. If I get sick I could die, but I also can’t have any vaccines now. It’s all very complicated.
I hope once I’m able to walk again things will be a little more normal. Thank you for the support!
I'm sorry you had GBS, but I'm so glad that it was discovered and you've recovered.
That's interesting as I've recently tested positive for an autoimmune disease. No diagnosis as to what but my Dr has been doing regular blood test and testing urine. The results he claims are baffling him. Always have blood showing up in urine and protein. Just had kidney scan as he thought lupus attacking the kidneys but luckily kidneys are healthy.
Autoimmune diseases are awful to deal with and it’s not easy to find which one it is either. I’m glad your kidneys are healthy though! I hope they find out which autoimmune disease it is soon.
GBS is a horrible condition to have. I’m very pleased to hear you have recovered. In the UK you would contact your GP or out of hours service as an emergency if you were experiencing progressive neurological symptoms especially if rapid onset. It is good of you to publicise the condition as it’s not widely known about & is dangerous ( this is me with my ex GP hat on ). Many people think it is the result of a number of viruses. My peripheral neuropathy is like a chronic GB - GB’s full name is Acute Inflammatory Demyelinating Polyneuropathy, mine is Chronic I D P & is normally nowhere near as serious as the acute version though the acute version is more likely to recover as it’s more treatable. The chronic version progression can take months. My GP’s were very good at rapid onward referral & investigation. I had never heard of CIDP till I got it but was well aware of GB syndrome.
Most folk with RLS do not have this & it is very distinct.
The bottom line is take rapid action if you have rapid onset of neuro symptoms. GB is well taught at med school & shouldn’t be missed.
Yes! I actually know about CIDP as well. They did tell me to watch my symptoms and to notify them if I notice anything comes back because if I have a “relapse,” it’s most likely CIDP not GBS.
Does GBS mean Guillain Barre Syndrome? I used to work at a call center for the CDC here in the US. We answered general questions from callers concerned about many things, and the first time I became aware of GBS was when I was giving out information on reactions to vaccines. Some people develop GBS after receiving a vaccine, although it is rare. IIt is also triggered by actually have the flu. I am not a medical professional, we were given a computer program where we could type in the caller's question and the system would bring up pertinent information which we would then read to the caller. I was very surprised to learn about GBS being triggered by having the flu or getting a flu vaccine, for some people. This is from the National Institute of Health: What triggers Guillain Barre Syndrome?
In Guillain-Barré syndrome, however, the immune system mistakenly attacks the healthy nerves. Most cases usually start a few days or weeks following a respiratory or gastrointestinal viral infection. Occasionally surgery will trigger the syndrome. In rare cases vaccinations may increase the risk of GBS.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
RLS
RLS
Breastfeeding and RLS
RLS in hospital - my experiences
RLS
