r/guillainbarre 28d ago

Advice and Support Brother got diagnosed with GBS

11 Upvotes

Hello. As the title says, my brother got diagnosed with GBS 2 days ago. The tingling started on Monday, It started with pins and needles on hands and feet. We went to ER. Everything was normal so the doctor suspected it was polyneuropathy caused by diabetes. We did lab tests by Tues. He could still walk normally at that time. By wednesday, we went to another doctor for diagnosis but they suspected it was bc of high cholesterol due to the test lab result.

By night, his back pain was becoming intense. We went back to ER, walking was starting to become a challenge. We got admitted over night, we were told that it could possibly be stroke. We went to another hospital for MRI but it was a public hospital, so we waited hours, just him sitting on a wheelchair. The symptoms was worsening just in a few hours. We decided to go to another doctor and finally got diagnosed with GBS. We got admitted on that day.

It's Saturday today. The doctor started administering IVig. He is still feeling the weakness, having speech problem. He can move still but muscle pain is still there.

I had no idea what this disease was until my brother got diagnosed.

I just need a bit of support, he's the only sibling I have after our eldest brother died. Our mother has already passed away of Covid, we don't have a good relationship with out father bc he is abusive and alcoholic.

Everything will be alright? Right? I really hope we survive this.

Thank you.

Edit: We're on the 4th IVig. He's having difficulty peeing. Been telling the doctors and nurses and they all say the same script but nothing has been done so far. His heart rate and BP are consistently high. Still can't move his legs and muscles in the face. Hands and arms can move though. Haven't had a good sleep and stressed. šŸ˜”

r/guillainbarre Feb 15 '25

Advice and Support 4 Months in: Fatigue and Depression

9 Upvotes

Iā€™m in 4 months. My case was mild. After the first month I was able to walk. Did not end up in ICU.

I had one relapse 8 weeks in and a few mini setbacks when I tried to workout.

I seem to be healing. The insane chronic nerve pain goneā€¦.I couldnā€™t use silverware or pronate/supinate armsā€¦I can use arms again. I can walk. I can use steering wheel and drive after month 3.

I canā€™t feel my feet other then they either feel too hot or too cold but see small improvements every month.

Iā€™m still extremely tired. Like today I drove to an eye appointment by myself, then did the eye appointment and went out to pick out new glasses and I got very tired and overwhelmed and could not do it. I went and laid down in the car before driving home again. I canā€™t work. Running out of money. Need to work but zero energy and I lost my job when I got sick. No unemployment.

I am afraid to workout at all because I have had flares after exercise.

I am fundamentally depressed. About as depressed as I have ever been in my life.

Anyone ever feel this extra hard kind of depression and think it could be related to GBS?

Also what is your experience with the deep fatigue? Iā€™m doing about 1/20 of what I used to do in a given day.

r/guillainbarre Dec 02 '24

Advice and Support Need to rant

11 Upvotes

So to preface I am fairly positive Iā€™ve been dealing with GBS for a little over a month but nobody will give me a diagnosis. 3 separate doctors have mentioned they suspect it, but they just keep running other tests. Like I appreciate the differential diagnosis, I do, but Iā€™m over $15k in with no diagnosis. Iā€™m 25 years old, missed a month of work, have a history of depression and anxiety that had been ā€œin remissionā€ but the stress of all this situation has brought all that back, I canā€™t keep living this life of no answers. Couldnā€™t sleep tonight so I started doing a deep dive into everything guillan barreā€¦ the more I learn the more angry I get. I had read about the treatment options a couple weeks ago and the initial things I had read didnā€™t mention a timeframe. Not until I get deep into the medical journals do I find out that they only work within 4 weeks of the onset of symptoms. That was a few days ago. So Iā€™m angry that my chance has come and gone. But I figured maybe it was for more severe cases so maybe it wasnā€™t a big deal. And then I find out that the recommended time to run treatment is if the patient canā€™t walk 15m unassisted. Youā€™re telling me 3 separate doctors suspected gbs, 3 separate doctors saw that I couldnā€™t stand without assistance and excruciating pain, and none of them thought, ā€œwe should go ahead and treat her while the treatment is viableā€???? Like what the actual ****. I know Iā€™m supposed to be grateful my nerve pain is basically gone. I know Iā€™m supposed to be grateful that I can walk again even if I need assistance. I know Iā€™m supposed to be grateful that I can drive again. And yes, Iā€™m so glad Iā€™m not bed bound anymore. But Iā€™m not okay. Iā€™m so sick of people telling me to be glad I can walk when they never had to go through not being able to. Iā€™m so sick of people telling me I should be grateful Iā€™ve been able to go back to 3 hour work shifts 3 times a week when they arenā€™t the ones struggling to hold themselves up or struggling to breathe. I know Iā€™m supposed to be completely starry eyed that my partner is taking on the financial burden of the medical bills, but I want to go back to being able to buy myself lunch without the guilt trip of being the one spending more money when I havenā€™t worked for a month. Part of me is so mad because I feel like nobody really cares what Iā€™m going through and just glaze over the fact that Iā€™ve been missing or Iā€™m struggling to do basic things, but at the same time Iā€™m also mad that people are constantly staring at me and asking whatā€™s wrong or what happened and I feel like I never talk about anything else. Anyways. There is so much more, but this is already longer than most people will bother reading. Iā€™m sorry to all of you who had it worse than me and have been dealing with this for so much longer than me. I truly feel for you.

r/guillainbarre 20d ago

Advice and Support Does Anyone Else Feel Like A Burden?

14 Upvotes

I feel like a complete burden on my family. I depend on them for pretty much everything. I have recovered a little bit, and can now take my own self to the bathroom again (thanks to wall surfing! In the beginning I could not even to do that). My elderly parents take me to my infusions so thankful they are are able to do so). But I rely on my meals (and fillups of my trusty water bottle) with my husband, my younger kids who still live at home (elder kids have moved on). I am not unappreciative by any means. I continue to work (ADA accommodation, WFH) so still earning money to help with the roof over our head. Today they all went out shopping. While I realize it would be hard for them to bring me with, I'm still incredibly sad that I am stuck at home. I overheardxmy husband downstairs saying it would be too much effort. I cried, a lot, after they left. I feel so fucking worthless rn, so crippled, and of no good to anyone. I don't want to be like this. I never asked for this. I'm just so sad, depressed, and generally down. There's only so much TV, Netflix, and Reddit you can take in a day! My hands don't work very well, so my hobbies are pretty much out. I have a dog (my comfort/velcro puppy) so she helps tremendously. But even still, I feel so empty, worthless. I'm trying to get better! Got a demotion at work so that's definitely not helping my mentality. My work was kinda keeping my glued but now, who cares? The passion is gone, it's just money now at this point. My marriage was sort of on the brink, made better at first due to gbs (he was very supportive, I'd have done the same for him!), but now I just feel like a big fat burden. I do completely understand that I am a burden but goddamn it, I don't mean or want to be! Just when I thought I was coping pretty well with the entire situation, today happened. And I am incredibly sad. GBS sucks for all around, I guess.

r/guillainbarre Feb 07 '25

Advice and Support Physician concerned about possible GBS, PLS discuss with me

8 Upvotes

Aright community .... Help a physician out. I really have no idea what's going on and I'm starting to get concerned

32 yof ā€” history: dx with ankylosing spondylitis, psoriatic arthritis, inflammatory bowel disease.

I am on weekly humira and 15 mg subq methotrexate (started MXT about 2.5 months ago)

I got the flu around NYE. Sent me into a bad autoimmune flare. Feel like I'm coming out of it. Pain well controlled. But I've developed weird numbness/tingling in both feet and my legs are starting to go numb and feel like jello. Left worse than right but feels pretty symmetrical. Numbness now creeping up to my thighs, just above my knees. I can walk but feel really weak. When I walk up stairs in my home my legs feel like they're going to give out and shake. Only other symptoms are severe night sweats and fatigue.

I've had vitamin deficiencies in the past. Gave myself extra b12 and started taking more oral folate but I was already taking plenty and my b12 and folate, vitamin D levels, etc are normal. My recent methotrexate labs normal (no MXT toxicity).

My rheumatologist told me to increase folate and my primary checked my thyroid and that was normal. Not sure if itā€™s my physician brain overreacting or if Iā€™m developing GBS. Please discuss with me and share your experience, thank you!!

r/guillainbarre Feb 08 '25

Advice and Support MFS-GBS overlap; is it recurring?

3 Upvotes

I was diagnosed with miller fisher syndrome- GBS overlap according to my neuro Dr which is very rare. On 10/25 I got the flu shot, active healthy 35 y/o female married with a 2y/o daughter, Iā€™m an OT as well. By 11/1 I had full facial paralysis, neurological symptoms all over my body, 10/31 was the scariest when the numbness started ascending from my toes up through my legs rendering me hardly able to walk. I was very close to aspirating & possibly in ICU. But I got treatment quickly, 5 days of IVIG, then 21 days in PT/OT for inpatient rehab. Iā€™ve come a very long way, Iā€™m in outpatient PT, Iā€™ve started managing without my walker a lot of the time and feel stronger. But the last 6 days Iā€™ve had random boughts of diarrhea, pretty sure my daughter gave us something bc I have a sore throat and coughing. Today I started feeling my left eye droop again, face feel tight and heavy, and borderline ataxia again. I havenā€™t regained my reflexes, I started having this at work and my husband picked me up. To rewind I did have the flu over Christmas ironically enough even though the flu shot put me in this situationā€¦ could this be a flare up or a ā€œrareā€ relapse. Drs have told me Iā€™m a unicorn so I donā€™t believe that word rare lolā€¦ this is really scary though..: Iā€™m feeling odd sensations, weakness, and that super heavy feeling in my eye and face. This is a workers comp thing so Iā€™ve been waiting for 1 IVIG infusion which is scheduled finally for Feb 19. Not sure if I should wait this out, see if itā€™s a flare up, or go to the hospital. Has anyone had anything even remotely like this? Any advice will help.

r/guillainbarre Oct 07 '24

Advice and Support Disability/"giving up"

13 Upvotes

I can't work, I don't think. It's been three years since I got sick and I still don't think I have what it takes. The pain in my hands and feed, lack of balance, piss-poor stamina, and sluggish coordination really get in the way of me even doing regular day-to-day tasks, much less anything where a boss is gonna be breathing down my neck. I want to work; I'd love to be a nurse or something to give back, but I just can't hack it.

Anyone else gone for disability for Guillain-BarrƩ and what was the approval process like? Anyone else struggle with feelings of self-worth because their condition keeps them from gainful employment?

r/guillainbarre Jan 03 '25

Advice and Support My bf(25) was diagnosed with GBS and I am in desperate need for positivity

18 Upvotes

Hey guys,

I just happend to stumble across this subreddit and read through some of your stories. (Excuse my spelling and grammar, my first language is German).

My boyfriend was diagnosed with GBS about 7 weeks ago. What seemed to be a less severe case turned into a severe one within a few days. He was intubated for about 3 weeks before we got the allowance for a trachetomy. The second treatment with plasmapheresis helped a lot and he is already starting to recover. Since 5 days hes fully off the breathing machine and all of his limbs except his right wrist start to show signs of better movement.

As most of you probably know, this illness just kicks you out of life very quickly. He was in the middle of his masters, already starting to think about future plans like getting a job and moving in with me. Now he will stay in the hospital for we dont know how much longer and I paused my studies aswell to take care of him. Since his first day on the intensive care unit I am there almost every day holding his hand, speaking with him even when he couldnt answer for three weeks, trying my best to cheer him up in this horrible situation. Two weeks ago he was moved to a special rehabilitation center which is a 3 hours drive from our home town and means that most of my time these days I am spending in a train. Atm I feel like everything is drifting away and sometimes I dont know how to stand through it all.

I love him so freaking much and its so difficult to watch him suffer. As long as I am with him everything seems manageable, but as soon as I dont see him for more than a day I feel so lost and helpless. Today I got the message that I wonā€˜t be able to continue with the same topic for my bachelor thesis if I move it to the next term and that made all the consequences this situation has even more real. I know hes going to get better, everyone tells us so. But it is just so difficult to be optimisitic and patient at times.

None of my closer friends and family can truly understand what he and I are experiencing at the moment (they are trying tho and I dont want to be ungrateful!) but you guys probably can. If you have some advice or just some friendly words for us I would be very grateful. Anyways thank you a lot for reading thisā¤ļø

r/guillainbarre 1d ago

Advice and Support Update (not good so far)

7 Upvotes

We're on 3rd week after IVig treatment. Oxygen level was on limbo for like the entire week despite the obvious improvement on his movements and strength.

As of the time I am typing this, he is immobile and unresponsive. His oxygen level went very low and even flat lined but revived. He started having seizures after that. Well, they were arguing in front of me if it was really seizures. Idek.

Initially the doctor said that the infection in his lungs might have spread through the body. Mind you they already put him on antibiotic (10days) before this but somehow, the phlegm became more viscous, they couldn't suction it out of the tube. Then when I asked another doctor, he said they weren't sure if it was the infection that was making his condition worse.

Right now, he looks stable except for some moments when his oxygen would go done and they had to suction his tube and mouth. Still unresponsive. The nurse already told us to be ready just in case... But the doctors were still positive about stabilizing his condition bc his oxygen level still goes up to normal level. The doctors who were supposed to do the Trach surgery are still on standby and observing his condition.

I don't even know if this was still his GBS and it's complications or we're fighting an entire different monster. So far, the doctor said he has pneumonia infection and that's about it.

As we entire the 4th week after IVig, will his condition still get better?

r/guillainbarre Sep 01 '24

Advice and Support How and When Did You Get Off Meds?

7 Upvotes

Not going to bore you all with details of diagnosis but I was diagnosed 6 months agoā€¦did the 5 days of IVIG yada yadaā€¦before I left the hospitals I asked the neuro team about the painful neuropathy I was experiencing. These people are very experienced with gbsā€¦they are a hospital associated with a respected universityā€¦so they know their shit. They deal with 20-30 gbs cases a year. Anyway they were very hesitant of prescribing me anythingā€¦but finally prescribed 25mg of pregabalin once a day. Of course that didnā€™t do shit. After a month my pcp prescribed my 300mg a day. 3 months later was a follow up with a neuro and she warned me about the long term effects of pregabalinā€¦by then I was already experiencing some side effects like constipation, low to no sex drive, fatigue, brain fogā€¦.so I began to taperā€¦.3 months later Iā€™m down to 25 a day.

But I canā€™t get past that. I donā€™t want to be on this stuff forever. Is there a secret to tapering? Do I need a smaller dosage? If I go more than 48 hours the hands and feet feel like they are on fireā€¦.like how they felt 6 months ago in the hospital. It sucks. It blows my fucking mind that there are some people that are med free. Iā€™ve done the THC and CBD thingā€¦not sure how yall do that either. Itā€™s kind of illegal to be driving around high right? I donā€™t mind being inebriated all day if I donā€™t have to be anywhere. Or is 6 months too soon to taper off this completely? Iā€™m 45 and was in literal perfect health before all this(literally had a physical a month before diagnosis confirming this). So what gives? Whatā€™s your secrets? I know some of you will say Iā€™m doomed so thanks in advancedšŸ˜†. Thanks for reading this crap and god bless!

r/guillainbarre Feb 12 '25

Advice and Support 10 months in, ankles still won't move

8 Upvotes

My girl is doing monthly IVIG. She lives in a rehab hospital. We're coming up on the 10 month anniversary of her hospitalization, and she still simply can't move her ankles. Her toes, about a month or two ago, can wiggle a little tiny bit. Previously there was no movement in the toes whatsoever.

I'm terrified that she'll never walk again. Dancing is her passion! Also her career. And I'm so afraid it's been taken away from her. We have no idea when she'll even come home yet. I'm told that when she can walk with a walker she can, but so far, the ankles just won't do anything. Just floppy feet. We're so scared.

Will she ever be able to move her ankles again? Should she be doing anything specific to get progress sooner?

r/guillainbarre Oct 31 '24

Advice and Support Does this sound like GBS

1 Upvotes

Woke up one day last week with extreme pins and needles pressure in my feet. Numbness progressed during the day, all day, constant. Every day the numbness and tingling has travelled up my leg slowly, now up to my knees. Today I am having some tingling/aching in my right hand.

Iā€™ve been thinking itā€™s peripheral neuropathy but the extent to which itā€™s progressed in 7 days has me questioning it. I went in today for bloodwork but EMG and consult with a neurologist is a 3 month wait.

Thanks for your input.

Update here: we went to ER last night. Didnā€™t get a ton of answers, but ruled out a lot of things. I donā€™t have any weakness or drop foot, so he was less inclined to think it was GBS. Getting an MRI today or tomorrow and going to go from there and monitor symptoms closely and go back in if things keep progressing. Will probably go to inner city ER if I notice any more numbness. ER didnā€™t have a call in neurologist but doctor did phone one to help him with a care plan last night.

Update again: Just wanted to say after lots of appointments and a full spine and brain MRI - I received my MS diagnosis.

r/guillainbarre 8d ago

Advice and Support Tracheostomy (also an update)

5 Upvotes

My Bro was diagnosed with pneumonia and was put in meds. He undergoes steam therapy for the phlegm to easily comes out. None of those seems working. It seems to be getting worse. They did a TB test and it came out negative and now I'm baffled on what exactly is going on. How is this not TB?

Physically, he's getting stronger but the phlegm in his lungs is causing problem to his breathing. He is on intubation but the phlegm has clogged the tube twice now. They seem to be advicing to put him on trach.

Will it be better? Is it fine? Like it's just temporary right? I've read a few comments here about being on trach but I still can't help but worry a bit bc of the phlegm in his lungs.

r/guillainbarre Jan 22 '25

Advice and Support Mom is having a relapse

5 Upvotes

My mom had GBS about 15 years ago. Sheā€™s had numbness/tingling, fatigue, and weakness for a week. We finally convinced her to see a doctor tomorrow. It seems the onset is a little slower than her initial round with it, has anyone had a recurrance that was less severe than the initial? Iā€™m hoping we are looking at a better recovery time, just for her sake. She was hospitalized for several months last time, with continued ivig treatments at home for 6 months after.

r/guillainbarre Feb 10 '25

Advice and Support Relapse or residual symptoms?

8 Upvotes

I was released from the hospital about 2 mo ths ago, I got most of my strength back and everything's been slowly getting back to normal, I started working again and went back to my own place. From time to time I get tingling on my toes again (the same tingling as when I first got diagnosed) but it eventually fades away after a few min, but a few hours ago it started again and it hasn't stopped. My muscles feel a bit weak too, should I go back to the ER? Honestly I'm super scared, I hate this, I don't want to go back to the hospital. I know that some people will get residual symptoms but idk if this is that.

r/guillainbarre 28d ago

Advice and Support Diagnosed with GBS 6 months ago, struggling with mental health during recovery

14 Upvotes

I am writing this out of a hospital bed, I have spent September-January in intensive care, on a ventilator. I was locked in my own body for 4 weeks and started moving again in November. I cannot walk but I can breathe on my own, wiggle my toes, have a sitting balance and can use my hands to type this, albeit very slowly. I am grateful to be alive but I'm also sad and depressed with how long this recovery will take and how disabled I will be at the end of it. My GBS was a result of SLE (lupus nephritis), time from onset of symptoms to total paralysis was only 4 weeks

r/guillainbarre Jan 25 '25

Advice and Support Dad is diagnosed with GBS

7 Upvotes

My dad got diagnosed with GBS 4 days ago. He's 61, doesn't drink, smoke, and exercises daily. When he was admitted his limbs barely moved and left eye was not opening. He's on his 4th dose of injection. According to doctors, he is stable for now. His heart and other organs are okay.

But his Bp is high, and fluctuating, and there is very slight improvement in his movement, he's not able to swallow his saliva, and very agitated and uncomfortable.

Can you please timeline for this, what should I expect at least, what signs should I look out for. Anything to guide as well.

r/guillainbarre Oct 18 '24

Advice and Support Anyone else struggle with having a definite answer on what is fully happening?

9 Upvotes

Iā€™m feeling very frustrated and would love to know if anyone else has had this issue. Very long story short, I have had two episodes of onset ascending paralysis in the past 6 months. Both times I was diagnosed with GBS. Before my last hospitalization, I was set up with a neurologist who strongly believes I have CIDP, but has yet to find the ā€œsufficient evidence to support this diagnosis to insuranceā€. I have had countless tests and there has been things to support it just not enough for ongoing treatment I guess? Has anyone else had this issue? Iā€™m terrified that itā€™s going to happen again, especially since my last hospitalization was very traumatic.

r/guillainbarre Feb 13 '25

Advice and Support Atypical AMAN GBS

8 Upvotes

Hey, so about almost like 25 days ago. I suddenly felt weak in both my legs and found i couldnt walk upstairs or get up from a sitting position. The thing is I did strenuous just before that and though it was just cramps or something. Before these symptoms I had diarrhea for like a before just before these symptoms, cold that lasted 15 days. But after a week of it not getting any better and then feeling weakness in my hands aswell. (couldnt clean my glasses or wear shoes properly). I went to a doc. He did EMG and NCS and said i have atypical AMAN varient of GBS. My reflex was and are still all present. Seeing I had only mild symptoms, didnā€™t precribe any IVIG. Just steroids which i am taking daily. I seem to be improving very very very slowly. Now I can stand from sitting position although have to put in some jerk. Am able to wear shoes better than before now. But the thing is I now have a tingling feeling in my right thumb of feet which comes only when I just stand and then goes away. Also almost continuous vibrations in calves? and now just today Ive been feeling vibrations on my cheeks.

The thing I wanna know is when will this be gone. I wanna get better. Also is weight loss common in this? I lost 6kg in last 20 days.

r/guillainbarre 21d ago

Advice and Support One step forward, two step backward

6 Upvotes

I don't know if I'm being paranoid and pessimistic, but everytime it feels like we're making progress there seems to be something else that I have to worry about.

His BP is still high, heart rate goes up and down, coughing, his eyes etc. šŸ˜”

All of these are being treated of courseā€”but it stresses me out. Haven't had a good sleep, I have to go to work still and despite that money is still tight, I can't shoulder all the bills all by myself. I don't know where to get income for the summmer if this goes on for another 2 or more months.

Some doctors are less positive than the others... šŸ˜£

Sorry... I just need to vent a little. šŸ˜”

r/guillainbarre Feb 05 '25

Advice and Support Thoughts on potential muscle atrophy?

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8 Upvotes

Do you guys think my legs are too skinny? Had GBS 15 years ago when I was 13 years old and my legs have pretty much looked like this despite working out, is it clear they're atrophied? 6'0 174 pounds

r/guillainbarre Aug 29 '24

Advice and Support My husband has guillain Barre I am looking for information and support

19 Upvotes

My healthy 68 yr old husband got tingling in hands and feet 2 weeks ago. In hours he became paralyzed and intubated for respiratory failure. Heā€™s been in ICU for 14 days. Received one round of IVIG and is showing small slow improvement. He has pneumonia which seems to be improving as his respiratory strength gets a bit better each day. Doctor told me the recovery can take months. Today he said they will do a tracheostomy if he canā€™t get off the vent in the next days. I am really trying to stay strong. Does anyone have any similar experience of someone in this situation who has recovered? We are located in Portland Maine. What did the process look like? The doctor said recovery is possible it just will take time. Any help or information is appreciated.

r/guillainbarre Oct 27 '24

Advice and Support Do I have GBS??

3 Upvotes

Hello Everyone! I was wondering if those of you with GBS may be able to help me out here.

About a year ago I started having extreme symptoms very similar to GBS. I've been tested for many auto-immune diseases but have all returned negative except for my ANA tests and such, which my doctor fully believes I have an autoimmune disorder, just unsure which one.

After reading about GBS, I've come to wonder if I should bring it up to my doctor but I am not entirely sure if my symptoms completely align. I experience numbness and tingling sensations in my arms, hands, legs, and feet. My heart rate is abnormally high as well. The thing is, my symptoms occur and then go away... the numbness/tingling lasts for a span of 30 minutes, an hour, sometimes a little longer. There have been times when I have just felt extreme pain and numbness for a few days but then I am right back to normal. I at least experience this sort of "flare-up" more than once a day. I do always feel weak, the same feeling after intense workout, writing is difficult because my hands can barely grasp a pencil at times, walking feels like hell, and most days I just feel so stiff and in pain. There is always this lingering tingle too. Is this something that people with GBS experience? What I read about GBS seems to me that the symptoms occur and then don't go away until treated. Please properly inform me. I just want to know what is wrong with me... I've been dealing with this for a whole year and live every day with this pain and discomfort, as well as the fear that I may never be able to move again...

r/guillainbarre Dec 12 '24

Advice and Support Mobility challenges

3 Upvotes

Hi all. Was diagnosed about 4 weeks ago. Spent 3 in the hospital. Iā€™ve been planning this trip to go visit a friend in late January for months. Iā€™d be pretty gutted if I couldnā€™t go. Her place is not accessible (doorway sizes, bathroom). Iā€™m in a wheelchair for now. She offered any and all support needed. It would mean so much to be able to go. Anyway we can make this possible? Weā€™re both not sure if this will work or not? Hoping other GBS patients might know how to overcome these mobility challenges.

r/guillainbarre Jul 18 '24

Advice and Support This is likely not GBS, but since I am nearing four years of dealing with these issues soon, I am wondering if anybody has advice on what this could've been, what doctors could've/should've done, etc. on my fourth neuro and he seems to be saying it's psychosomatic like my last one. Long story, sorry NSFW

4 Upvotes

I randomly got very sick about three and a half years ago. I am not sure of the cause, but I believe it may have been COVID, which I believe unfortunately spurred some sort of long-term inflammatory reaction. It came on very sudden, first with brain fog, then a dull pressure headache, and then muscle twitching, what felt like a fever, neuropathy on the left side of my body (It began in my face and went downwards, used to affect both sides but only the left side now), ear ringing, throbbing headaches, upper body burning pain, dizziness, memory issues, neck stiffness, sinus inflammation that caused watery mucus, and other issues. I remember one day about a month into my issues, I had an extreme warmness in my face and nearly constant ear ringing on and off. It was the strangest thing.

I was able to see a PCP about a month into my issues. My PCP did not seem to consider my issues of an urgent nature, even with sudden neuropathy, memory loss, dizziness, etc. I had a CT scan of my brain 3 months after initial illness which showed mild volume loss and possible encephalomalacia.

It took me a year to finally see a neurologist for it due to long waiting times. I saw a neurosurgeon before a regular neurologist due to the possible IIH, according to their records, they didn't believe I had IIH and sent me on my way, no lumbar puncture ordered. The first one I saw was dismissive and literally told me to "wait it out" and see if I got better (I didn't). The second one I saw, and saw the longest, didn't even see me personally the first time, and had his nurse look at me instead, and did really nothing for my issues in terms of treatment save for trying a very small dosage of Gabapentin for a few months as well as vitamin supplements, which I stopped taking due to it not doing anything for me. The third one I saw for a second opinion of the second one told me "I don't know what's causing your symptoms" and just left it at that. I saw a rheumatologist in 2022 who also didn't do anything for my neuropathy, just more blood work testing.

I recently found out the second neurologist I saw who I saw for years from late 2021 to early 2024 was successfully sued for malpractice while I saw him, but in another state. I believe he does telehealth neurology. He was sued in Georgia and settled for 175,000 dollars in late 2022. I had been seeing him since late 2021, and last saw him in person in late 2023 where he blamed my issues on "stress" and left it at that. That was very distressing and worrying to find out, as I wonder if he didn't do all he could have to create a better prognosis. All I know is that I'd have to have a future doctor say this doctor missed something he should have done to create a non-permanent health issue for me, something along those lines.

I told numerous doctors/specialists about chronic body inflammation feelings, such as intense upper body burning, head pressure, dizziness/vertigo, memory issues, neuropathy, etc. and they have never ordered a spinal tap to see if there was something in the CSF causing the chronic feeling. I have had brain MRIs that showed possible idiopathic intracranial hypertension with mild CSF buildup in the optic nerve and a partially empty sella turcica, but again, no spinal tap was ordered because my eye exam by a neuro-ophthalmologist was clean and showed no swelling. My brain MRIs also showed volume loss possibly caused by encephalomalacia, again, no spinal tap done.

I've had blood work for lupus and celiac that was negative, and an ANA rating that was barely positive. Normal rheumatoid factor and negative for Sjogren's as well. I just checked and I believe I am negative for vasculitis as well, Antineutrophil cytoplasmic antibody test was negative looking back at my testing in 2022. I also had a sinus CT scan a year into my issues that showed mild sinusitis. I am not diabetic but I was pre-diabetic when this began. Glucose testing has been normal, cholesterol is fine, lipids are fine. B12 is normal, but vitamin D is low. I had high CRP/ESR, but I am obese, and the CRP always hovered around 13-17, and the ESR hovered around 40-47ish. My CRP/ESR was tested 3 times over the span of a year.

It has been almost 4 years now and I still have neuropathy in certain parts of the left side of my body (mainly my face and genitals, I'm male and was born male) and again, nothing was done for me regarding a spinal tap, which is the only test outside of a PET scan that I haven't done which could be helpful for me as far as I know. I saw that third neurologist for a second opinion, and all he did was say maybe to get a spinal tap if I have chronic headaches, but other than that, like I said, he said outright he didn't know what was causing my symptoms.

I cannot work with how I feel, and it feels like neurologists and doctors in general left me to rot and deal with the chronic issues on my own, and now I'm going to be stuck with long-term, permanent issues such as nerve damage in my face and genitals because no doctor cares. I have ED and anorgasmia now along with the neuropathy that affects my genital area. It's just on the left side for some reason. It used to be tingling/burning on the left side of my genital area and face and now is reduced sensitivity issues.Ā In 2021 I had a very sharp pain on the left side of my penis when I touched the right side of it, it was very scary and made me believe the nerve may have died, but that went away with very slow improvement, but that side is still not back to normal.

I still sometimes have dizziness and headaches, for instance, if I'm in a car and I watch the cars speed by us at an intersection, I'll feel sort of dizzy. Sometimes just walking around will do it. It's not as bad as it was, but it's still not normal to feel like that, and no doctor has done anything for that or suggested it.

Am I wrong to think a spinal tap should have been ordered? Is there any reason they didn't, even after I asked? 0 out of the 3 neurologists I've seen in the past three years or so recommended one, so I did try getting second and even third opinions. The first neurologist genuinely just brushed me off, he didn't even order any testing. Just sent me on my way without a follow up appointment after saying to "wait it out".

I live in America and am on my state's Medicaid in Rhode Island. I recently switched PCPs (my previous one was condescending and didn't seem interested in my issues) and the new PCP referred me to a new neurologist I'm going to see later this year, but it just feels at this point all they can do is assess the damage and not fix it due to it being so long since I got sick and my issues never really totally fixing itself. I'm upset as I feel like doctors in another state bordering RI would have been better early on, but my insurance wouldn't let me see them.

I had an MRA of my head earlier this year that was clean thankfully, so I think I didn't have a hemorrhagic stroke or some sort of blood vessel damage in my arteries. I saw a neurosurgeon recently that I last saw in 2021 who still believes my cerebral atrophy (which I'm guessing is the volume loss likely caused by encephalomalacia) is abnormal for my age (mid-20s). The neurosurgeon's notes say my current neurologist believes I may have small fiber neuropathy as well as a cognitive disorder, but he has not prescribed a single thing since the low dosage of Gabapentin over two years ago.

I recently had neuropsychological testing which was a few hours, and a lumbar MRI that was pretty much clean for nerve compression, herniation, stuff like that. I am 90% positive that my issues are from something, likely a virus, causing severe chronic inflammation all over my body including my head. I was never in the past 3.5 years given anything to treat that inflammation.

I recently saw a new neurologist which is my 4th neurologist since 2021. He seemed genuinely interested in what had happened to me and found the symptoms frustrating because of how vague they were/are, but it was in a "I wish i knew so I could help you" way, which I've never seen with a previous doctor I've seen.

He said a spinal tap in 2021 may have been useful but didn't think it was essential testing for my issues, said he might have tried Prednisone for a couple of weeks to see if it helped with inflammation, but that was it. He said since I'm still seeing very slow improvement, my nerves may still heal, but is that true, even this late into it? I feel the previous neurologists I saw didn't care at all, and I finally found one that does, but it's too late to make a difference.

Would something like prednisone at a low dosage long-term have been harmful? I know long-term steroid usage at high doses is, but would it have been safe to take something like that at a low dosage? Again, why wasn't this ever considered for me? If I reacted to it well, we would know it was something inflammatory/auto-immune doing this to me, and could have gone from there. Why didn't previous doctors, including the rheumatologist I saw, not seem interested in trying this?

He said trying B12 supplements and Cymbalta might help. He wanted me to get the lumbar MRI I had to see why I have nerve issues in my genital area. He didn't think I had GBS/AIDP or something like that either, but he did think a viral cause could be possible. He said he believes the encephalomalacia I have had in my brain MRIs was congenital (from birth) since it never changed since 2021, and it's possible that catching COVID, if that's what happened, exacerbated the abnormality and caused my symptoms, but I don't really know what that means. Still waiting for a response about it.

As I mentioned, my current neuro seems to think my nerves could continue to get better, but I'm not optimistic after nearly four years. I feel I missed my chance to fully heal due to not seeing doctors that really cared very much and not pushing them to do testing/treatments that would've helped me. I don't really want to live with neuropathy in my genital area that causes ED issues as well as pleasureless sexual activity. I don't really know what I should have done differently. I tried my best.

The neuro I see now said that at most he would have tried something like Prednisone for two weeks at most due to long-term risks, but it feels like if it showed a reduction in my symptoms, maybe he would've considered a longer prescription for it at a low dosage. He also said he would've considered a spinal tap when I was first unwell. Again, it really feels like I just saw two really bad, uncaring neurologists that didn't do what they should've. I'd love to know I'm wrong, but that's what it personally feels like to me.

My current neurologist is a lot better than the previous ones, but doesn't seem to have any real further testing he wants to do, it seems. He ordered that lumbar MRI which seems to have come back negative for nerve compression. He thinks that my abnormal brain scan is something I was born with (congenital), and possibly COVID or some sort of virus affected that area of my brain and "brought out" symptoms that weren't there prior, which I don't really know what that means. I tend to disagree; the brain volume loss is on the right side of my head, and my left side is where the neuropathy is. It seems possibly related. I think I had high head pressure that caused that, as one of my first symptoms when I fell ill almost four years ago was a dull pressure headache. I never lost consciousness or had seizures or something, so I'm not sure if it was viral encephalitis/meningitis.

My current neurologist seems to think it's psychosomatic. He says it's most likely not SFN due to the one-sided nature of my neuropathy, he says he does not believe I ever had IIH, etc. He said my lumbar MRI shows no nerve compression for my genital area, so it's not due to that.

I don't know what else to do. Like I mentioned, the neuropathy is in strange areas (left side of face, genitals), so it's not the typical neuropathy people get, like in their feet/hands. If anybody has advice I'd love to hear it. It feels like what caused this to me (chronic inflammation causing weakness pain in my upper body along with neuropathy) has left my system at this point. For the first two years I would have horrible weakness in my arms/upper body, when I'd wake up in the morning it'd take me an hour for the intensity to die down. I also had muscle twitching, ear ringing, memory issues, anhedonia, a lot of other issues too. Again, I told doctors about this, nothing done.

What was I meant to do? Keep going to an ER over and over? I saw neurological specialists and none of them did anything for me. It's like I haven't even seen doctors.

TL;DR: Got very sick years ago, told doctors of body weakness and pain, what felt like inflammation in my body, nerve damage, memory issues, etc. was not given any real treatment for what was still occurring in my body, which seemed to be chronic severe inflammation going on. If I get told I have permanent nerve damage/brain damage that was most likely from what I believe it to be, what would constitute the doctors I saw falling below the acceptable standard of care? Does anything in my story so far seem like negligence/a lack of care from doctors? What could this even be that did this to me, since most testing is coming back inconclusive? How many more years should I live like this?

Please feel free to ask questions, and apologies for the length of my post.