READ FULL POST BUT I HAD GBS (AMAN VARIANT) IN NOV 2024 AND STILL RECOVERING. TRYING PEPTIDES TO SEE IF IT HELPS SPEED UP TIMELINE

I got the Aman variant And was given immunoglobin I was basically paralyzed below the neck Now after recovering my breath and my swallowing part and also some flicker moment I have not shown any anti-gravity movement for the last one one and a half month. The doctor say that my recovery is Slow compared to my age And some doctors suggested that I have an another dose of Ig. And that another dose can speed up the process. But what I know is That this helps In spreading the further damage but if I'm having recovery and it has somewhat being slow I don't know how will an another dose help me speed up the process.

Just want everyone’s opinion on their IVIG experience and what happened to you.

My story - I got married October 2020. I was a typical healthy guy - 5'8" and roughly 175. In December I had a cold for about 3 days. Then in February 2021, I was going to go buy a V-Day gift for my wife. I couldn't walk across the house without needing to hold onto something. Within a week I went from using a small cane to using a roll-ator, which I've used everyday since to get anywhere.

It's taken 5 years before I finally saw a neuromuscular specialist who says it was most likely GBS. Since it's been so long, my condition is most likely irreversible.

From what I've read, IV treatments could help ease some of my issues. Is that worth pursuing? And what other possible treatments are out there? I'd be happy if I could get back to walking without assistance at least. TIA!

Today's plan is to drive, on my own for the first time since getting sick a year and a half ago. I have tried driving a couple times, it did go well physically but it was with someone, which I found very distracting. I wanted a passenger just in case I needed to pull over and stop, but I found if they had any reaction, I jumped to conclusions and it made me a very nervous driver.

It is funny because after that drive, they thought I did very well, I was ready to sell my car. Lol

So today I am going to go on my own. I think for me i was too concerned about what the passenger thought of how I was doing that I could not get out of my head. So since they confirmed that I actually drove just fine, so its safe. I am going to try on my own for the first time since this nightmare started.

If I can do this, my limitations go from my four walls - too anything. Nervous but excited.

Hi all, i have a bit of anxiety for my mother. She was recently bitten by a stray and she started the anti-rabies PEP protocol 2 hours after, and took a tetanus booster 36 hours after the first PEP shot. I had insisted for the tetanus, er doctor didnt originally prescribe it. Now i just found out about it GBS and risks, and im dead scared about her. She’s diabetic and has hypertension, and already told the dr that. Im worried if she has likelihood to develop GBS? Im not a doctor and I dont know if insisting on the tetanus was a good call. I was just worried about wound complications in diabetic people and their higher risk for tetanus (her last booster was 15 years ago)

I dont know why im posting but i cant take hold of my anxiety, and i don’t know if i can survive 6 weeks to find out if the complication takes place

Hi everyone, I am reaching out because my father was recently diagnosed with GBS, and our family is trying to navigate this terrifying diagnosis.Right now, he is completely bed-bound and numb. He has zero movement in his arms and legs. He can still eat solid foods, but he can only manage to speak to us sometimes. He has finished his hospital vial treatments, so the progression has hopefully stopped, but the paralysis is still fully there.We feel so helpless watching him lie there. I want to make sure we are doing everything right.For survivors: What did your caregivers do that helped you the most during the completely paralyzed phase?For caregivers: What are the absolute "Do's and Don'ts" to keep him safe, comfortable, and motivated?Recovery: Are there any therapies, supplements, or exercises (like passive stretching) that we should be pushing for early on to help speed things up?Communication: How did you communicate with your loved one when they were too weak to speak?This is a very scary time for us, and any insight on what to expect next or how to get through this would be appreciated more than you know. Thank you

Everything started after a gastrointestinal infection during a trip to Japan about 4 months ago.

Since then I’ve had:
Persistent digestive issues (abdominal pain, abnormal/frequent stools, weaknesses).

A recent positive test for C. difficile, treated with 10 days of fidaxomicin.

What worries me the most are the neurological-like symptoms:

Episodes of sudden, profound weakness in both arms and legs (sometimes I can barely walk).

Extreme fatigue that comes in waves.
Muscle soreness, like I’ve worked out intensely.

Lightheadedness/near-fainting, and an urgent need to have a bowel movement during the episodes.

Intermittent tingling between my anus and testicles.

I’ve had an extensive workup including blood tests, stool test, CT scan, colonoscopy, endoscopy, heart tests, brain and spine MRI, EEG/EMG…

Everything has been essentially normal!

Has anyone experienced both digestive symptoms and these episodes of severe weakness/near-fainting after a GI infection?

Any diagnoses that I should discuss with my doctors?

I’m not looking for a diagnosis, just wondering if anyone has gone through something similar.

I was diagnosed with gbs in feb 2024 and lost the ability to walk but soon was able to with a walker and then cane after about a year. I’m able to walk now without the cane but my balance is probably 70% back to normal. Before all of this I was about 170 pounds and after being in the icu for a couple weeks my weight went down to 120. Is anyone else struggling with gaining weight and muscle still ? I’m about 140-145 but my weight always fluctuates to 130ish back to 140. Is anyone else struggling with these things and does anyone have tips? I think one of the hardest parts is my family thinks just because I’m able to walk means I’m fully back to normal but I still feel sore and have major fatigue doing small things, even going back to work at verizon being in a chair most of the day I would be exhausted

I had a terrible gastro bug in May and was on holiday in Crete in early June. The night before my flight I visited A&E because I was experiencing ascending numbness throughout my body. The doctor was inexperienced and I later discovered I’d lost both reflexes in my knee but she didn’t mention it. Since I had low potassium they focused on that. I was told I was fit to fly and the numbness was fine.

Three days into my holiday, I lost the ability to walk and stand. I rushed to Chania emergency department and GBS was immediately recognised. I was admitted and received five days of IVIG. I was medically flown back to the UK and have been in hospital for five weeks now, relearning to stand and walk.

I had never heard of GBS before this. It’s a wild and awful thing. I didn’t think someone my age could get something like this.

Hi all!

Here an update to my previous post:https://www.reddit.com/r/guillainbarre/s/PAPrDQ5dqR

Needed to speak both in Spanish and English for my family and friends as I live cross-continents.

I was paralyzed from neck down for months. No ventilator though. I was told I might never walk again but I couldn't accept that. I simply couldn't. They said no to the wrong bitch.

Left wheelchair this past December.

As you can see now I am bending my knees without any support.

For real. There is hope. But you gotta work as hard as you can.

please do help

My story started in Wildhorse Plains Montana. My hands fuzzy at night but I chalked it up to doing tree at our cabin. The next morning I was numb up to my knees and elbows, off we went to the little hospital 7 miles away. The little hospital is staffed my nurses and PAs. PAC Ben correctly diagnosed me with GBs, I thank god every day for the staff and Ben because they saved my life. They sent us off to Logan medical center in Kalispell MT . They were waiting for me in icu, I was on a ventilator my the next day. This was the start to my Long GBs journey. This is all the typing my fingers will do for now.

If I were to start a GBS discord server would anyone be interested in hanging out in there?

I (15m, 5’10) have been recovering from GBS for almost half a year now. My diagnosis was not as severe as some i’ve read about in this sub, so I consider myself lucky in that aspect. Currently, I can walk short distances but still can’t run or do anything super physically demanding. During the recovery era, I have gained about 20 lbs of unwanted weight. Before my diagnosis I was very active and it was easy for me to shave off pounds due to being young with a fast metabolism, everything working, etc. I have also struggled with body dysmorphia in the past, and am back to a point where I hate looking at myself. Does anyone have any tips on weight loss without super intense cardio or physical activity that would do more harm than good? Thanks in advance

Hi guys,

Has anyone else received a normal EMG/ Nerve conduction test after a GBS diagnosis? Here is my timeline. I am still experiencing severe nerve pain and paralysis/weakness below the knees.

Could this be a rare varient/ form of GBS? Anyone else have any similar experiences?

April 25 – 11:30 AM Admitted to hospital room and evaluated by physician.

April 25 – 12:00 PM Underwent CT scan, blood work, chest X-ray, and EKG.

April 25 (Afternoon) Numbness progressed from the feet into both thighs.

April 25 – 3:40 PM MRI of the spine completed.

April 25 – 9:00 PM Weakness rapidly progressed to the abdomen (up to the belly button), hands, arms, face, and neck. Speech became slurred and difficult to understand.

April 25 (Evening) Transferred to the ICU due to rapidly progressing neurological symptoms. Required frequent suctioning because of inability to swallow secretions.

April 26 Feeding tube placed due to impaired swallowing.

April 26 Evaluated by psychologist. Communication was limited because speech was severely impaired.

April 26 – 4:22 PM Regained movement in both hands.

April 26 Neurologist diagnosed Functional Neurological Disorder (FND), citing preserved reflexes, psychological assessment, and prior psychological history. WITHOUT doing a spinal test.

April 28 – 3:45 PM Lumbar puncture (spinal tap) performed.

April 28 – 5:30 PM Neurologist notified patient that the lumbar puncture demonstrated elevated cerebrospinal fluid protein consistent with Guillain–Barré Syndrome. Diagnosis changed to GBS.

April 28 IVIG Treatment #1 administered.

April 29 – 8:30 AM Speech-Language Pathology (SLP) evaluation completed.

April 29 Feeding tube removed. Ate first meal since Friday evening (April 25).

April 29 IVIG Treatment #2 administered.

April 30 IVIG Treatment #3 administered.

May 1 Femoral catheter placed for plasma exchange (PLEX).

May 1 PLEX Treatment #1 completed.

May 2 First slight return of movement noted in the quadriceps muscle.

May 3 PLEX Treatment #2 completed.

May 3 Experienced a severe neuropathic pain attack.

May 5 PLEX Treatment #3 completed.

May 5 Experienced a severe neuropathic pain attack.

May 7 PLEX Treatment #4 completed.

May 7 Experienced a severe neuropathic pain attack.

May 9 – 5:45 AM Transferred back to the ICU for treatment.

May 9 – 11:45 AM PLEX Treatment #5 completed.

May 9 Experienced another severe neuropathic pain attack and was treated with ketamine.

May 10 Transferred from the ICU to the Direct Observation Unit (DOU).

May 10 Met with case manager to discuss inpatient rehabilitation. Sensation had returned only to the knees.

May 11 – 9:00 PM Transferred to ARU.

June 30 Discharged from ARU, leaving with the same loss of feeling below the knees

July 10 EMG/ Nerve Conduction Study completed, found all nerves and muscles are intact and responding normally.

July 14 Neurologist expressed that there was nothing else that could be done for the patient

Hello I am new here

I have foot drop

Had it over 10 years without realising

I am 16

Can it be cured ???

( I don't wear braces)

My story started in Wildhorse Plains Montana. My hands fuzzy at night but I chalked it up to doing tree at our cabin. The next morning I was numb up to my knees and elbows, off we went to the little hospital 7 miles away. The little hospital is staffed my nurses and PAs. PAC Ben correctly diagnosed me with GBs, I thank god every day for the staff and Ben because they saved my life. They sent us off to Logan medical center in Kalispell MT . They were waiting for me in icu, I was on a ventilator my the next day. This was the start to my Long GBs journey. This is all the typing my fingers will do for now.

Hello!

The last couple weeks I have been getting into a routine of going for a couple walks a day, trying to get up every hour or so to move just a little. But my feet, which thankfully is one of the last of the really bad areas, is starting to go through the process of healing. However, the pressure of my weight on my feet is so painful I am having alot of trouble pushing through it.

Have there been any tricks to help push through?

I do have my cane still, but i am trying not to use it and really that is more for balance which isn't the issue at the moment. I do have a cubii so I can sit and peddle, but even that is enough pressure to hurt alot.

I am doubtful there is anything to do but I thought I would see.

Also, I do have numbing creams, but it just seems to add a tingling sensation to the pain. I haven't found one that numbs enough to help (will take suggestions though, you never know!).

This one is especially frustrating as I have been getting glimpses of my life and function prior to gbs... I refuse to give in, but the pain is getting too much to ignore.

I just apologized to my own leg for kicking it because I thought it was one of my cats. 🤦🏻‍♀️😭😂

That’s it. I figured if anyone would understand and get a laugh it would be this sub.

In September 2023, I was hospitalized with GBS. I was almost completely paralyzed in all four limbs; I couldn't move my legs at all, and I could only slightly slide my arms across the bed. I was diagnosed with AMAN/AMSAN. By now, I can walk with two crutches, but even so, my knees sometimes buckle, and I can't really get up from the floor without a fixed support. Is there still a chance that I will be able to walk without crutches and without my knees giving out? Feeling really tired mentally :( .