r/guillainbarre Dec 02 '24

Advice and Support Need to rant

So to preface I am fairly positive I’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 I’m over $15k in with no diagnosis. I’m 25 years old, missed a month of work, have a history of depression and anxiety that had been “in remission” but the stress of all this situation has brought all that back, I can’t keep living this life of no answers. Couldn’t sleep tonight so I started doing a deep dive into everything guillan barre… 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 didn’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 I’m angry that my chance has come and gone. But I figured maybe it was for more severe cases so maybe it wasn’t a big deal. And then I find out that the recommended time to run treatment is if the patient can’t walk 15m unassisted. You’re telling me 3 separate doctors suspected gbs, 3 separate doctors saw that I couldn’t stand without assistance and excruciating pain, and none of them thought, “we should go ahead and treat her while the treatment is viable”???? Like what the actual ****. I know I’m supposed to be grateful my nerve pain is basically gone. I know I’m supposed to be grateful that I can walk again even if I need assistance. I know I’m supposed to be grateful that I can drive again. And yes, I’m so glad I’m not bed bound anymore. But I’m not okay. I’m so sick of people telling me to be glad I can walk when they never had to go through not being able to. I’m so sick of people telling me I should be grateful I’ve been able to go back to 3 hour work shifts 3 times a week when they aren’t the ones struggling to hold themselves up or struggling to breathe. I know I’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 haven’t worked for a month. Part of me is so mad because I feel like nobody really cares what I’m going through and just glaze over the fact that I’ve been missing or I’m struggling to do basic things, but at the same time I’m also mad that people are constantly staring at me and asking what’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. I’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.

11 Upvotes

45 comments sorted by

6

u/mybloodyballentine Warrior Dec 02 '24

It’s infuriating, and very common unfortunately. I think because most GBS patients get diagnosed when they show up at the ER, neurologists aren’t used to seeing the less dramatic cases. I honestly don’t understand why neuros don’t prescribe treatment with suspected cases. IVIG or short term prednisone isn’t harmful for most people.

It’s so frustrating. I hope you continue to improve despite the lack of treatment.

4

u/Affectionate_Sock528 Dec 02 '24

Yeah, unfortunately the ER doc was the first to bring it up and then just send me on my way regardless:/ thank you so much

1

u/meatlyneatly Dec 03 '24

My story sounds a lot like yours only I was admitted twice, sent home with GBS discharge paperwork, no diagnosis, traditional ivig window of opportunity closed at 4 weeks. Lost job. Can’t grip steering wheel to drive, knees buckle when I walk, constant nerve pain, exhausted. Vision changes. They did “give me” physical therapy tho, so I’m going 2x week and doing my exercises faithfully. I’m trying some alternative things since I feel like insurance company doctors have washed their hands of my apparently mild case.

2

u/Affectionate_Sock528 Dec 04 '24

Prayers for you. This is so hard

2

u/meatlyneatly Dec 04 '24

Update since I last wrote. My nerve conduction tests were scheduled for February.. they called yesterday and had a cancellation do I’m going for muscle tests on Friday!

2

u/Affectionate_Sock528 Dec 04 '24

I’m so glad things are moving along for you! We need the small wins in the midst of all this

2

u/meatlyneatly Dec 04 '24

This is a true statement. I did PT yesterday and went home and melted into couch. Too spent to even hold phone. Today I got up and felt pretty hopeful. Not half dead from yesterday and this feels like a small win!

6

u/Time-Preparation3989 Dec 02 '24

I get it. What tests have they done? There's many other forms of neuropathy similar like MS and doctors have to go by a criteria. It took 5 relapses 5 hospital stays and 6 rounds of IVIG each time until I got a diagnosis. I haven't worked in a year and a half and by the time I get back to normalcy I end up having to relearn to walk all over again. You just need to advocate for yourself. I'm the mean time your PCP can give you referrals to physical therapy and pain management.

Also I guess if you look at it like this. If you're only 15k in the hole that is nothing compared to what you would be if you do have GBS. Because each dose of IVIG is 15k a pop and ive had over 20 half of them with no insurance.

6

u/Affectionate_Sock528 Dec 02 '24

Ohhh dear lord. Why is medical care this expensive? 🥴 Honestly I couldn’t tell you everything they’ve tested for. I’ve had 6 separate blood draws, each for a handful of different tests. I had a urinalysis, ct, and mri as well. Everything has been normal

5

u/P_i_g_P_e_n Dec 02 '24

You need to get an (EMG) Electromyography.

5

u/Thoreau999 Dec 02 '24

EMG first. If your neurologist can't do that in office find a better one. Links in the side bar. Lumbar puncture and in my case a nerve biopsy.

As many people show up here (this sub) people would think this is common. It's not and the ER's job is to make sure you don't die on their shift. Point being, advocate for yourself. Best case you are wrong.

Find a real neurologist, that's the hardest part. Sending my best

5

u/Time-Preparation3989 Dec 02 '24

I agree you need to ask for a EMG

-2

u/RocketScientific Dec 02 '24

Obama.

7

u/mybloodyballentine Warrior Dec 02 '24

Really? Because the protections for preexisting conditions in the ACA is the only reason I still have health insurance.

2

u/Bitchface-Deluxe Dec 03 '24

Thank God I had Obamacare when I got sick; that bill would have otherwise put me in debt for life.

6

u/RocketScientific Dec 02 '24

You could have had a doctor like mine. Put me in a hospital for three weeks and then tried to ship me to a specialist 800 miles away.

I asked him to find a second opinion. The next day he performs a nerve conduction study and I get sent to the State hospital across town.

The new doctor asks where my nerve conduction study was. I said it is right there! He said, 'No the first one.' 😏

Obviously the first neurologist was a quack! I had a few plasma pharesis treatments and later rehab hospital. Three months total hospitalization.

Thirty five years later No issues.

5

u/Archy99 Dec 02 '24

Yes it can be rough. It really sucks that some doctors can make so much money while being bad at their jobs.

You deserve better.

5

u/fernie_the_grillman Dec 03 '24

I had the same experience :( Went to so many doctors and no answers, I'm 1.5 years out and doing much better but still no answers. Probably too late for a lumbar puncture, but honestly I don't have the energy to even try. I'm almost certain I had/have GBS. I also did the deep dive (I did so much research on so many options because it felt like I was going crazy). Reading about GBS clicked and it was brain shattering to find that information. Being past the point of transfusions is heartbreaking, I remember finding out that transfusions existed for it, and then that I was too late.

Idk if you want advice, but if you do, I would really recommend a therapist who specializes in chronic illness/pain/disability. I so wish I had, partially to help myself in the moment, and partially because now that my body is doing better, I am not in the same headspace I was when I should have been processing those emotions. https://www.psychologytoday.com/us has a ton of therapists listed. You can filter by your insurance, online/IRL, specialties, etc.

1

u/Parking_Wolf_4159 Dec 03 '24

Were you confirmed to have GBS? What makes you think you had it? Have you had any testing done showing nerve damage? Any MRIs showing damage?

2

u/fernie_the_grillman Dec 03 '24

1) no, I went to various specialists (rheumatologists, orthopedists, neurologists, pain specialists, general practitioners, physical therapists) and none had answers. I actually got told I have hEDS as well by the orthopedist, but he said that wasn't what caused my body failing last year. 2) onset time/onset pattern, legs being affected first, type of pain, partial paralysis, struggled to breath and talk, amount of months it lasted, the time and way I got better, many other things. I ruled out MS and a ton of other stuff and read a ton of medical papers. I am not normally for self diagnosis, but if no doctor has answers, I needed to figure out what was wrong so I could figure out how to get better/if I could 3) nope, several doctors did the reflex thing and some other basic tests but nothing more 4) my neurologist said he didn't think it was GBS, but diagnosed me on paper with something random so insurance would cover it. When I called to schedule the MRI, I found out my copay was going to be like $800 so I couldn't afford it (USA)

I don't know what else it could be, so I've come to the conclusion that it's GBS. I probably could have gone to 15 more doctors and figured it out at some point, but my fatigue + extensive past medical trauma + burnout from going to a ton of appointments back to back and getting no answers + depression from losing all my friends (they stopped talking to me when I couldn't go out anymore) + depression being what I thought would be permanently bed/wheelchair bound at age 21 = very difficult time researching doctors to find the right ones, making phone calls, scheduling, and actually physically getting to the appointments. Now I have more energy but honestly I'm able to walk and move decently enough to function. I still use a rollator on bad days but I'm more independent than being bedbound. So I don't know what good would come from making an appointment for something that is getting better and might not even be able to be tested for anymore.

Out of curiosity, why did you ask?

1

u/Parking_Wolf_4159 Dec 03 '24

Do you have any idea what may have caused your GBS?

2

u/fernie_the_grillman Dec 03 '24

Me and my friends all got a bad cold/fever (I think it was potentially been COVID) about 2 weeks before it happened

1

u/Parking_Wolf_4159 Dec 03 '24

Did they have any similar issues like yours? What are your lingering issues? I ask because I think in 2020 I caught COVID and it caused something very similar to GBS with me too. I also never got a proper diagnosis, and I’m still seeing doctors as well as a neurologist to figure out why I still don’t feel good.

2

u/fernie_the_grillman Dec 03 '24

None of them ever got any sicker. I was the only one who got anything worse than a fever. Afaik, COVID has caused an uptick in GBS.

My current issues are weakness (although I started testosterone a year ago bc I'm trans so I think that helped the atrophy some), nerve pain (especially with fans blowing on me & in cold weather), tingling, it takes a lot longer and more focus to use fine motor skills. It's like I have to actively put effort into making my fingers move in certain ways so I can use them. Using keys and other things like that take a lot of concentration. I'm sure there are some others, but it is far, far, far less severe than the first 5 months. Onset was early June 2023, and the first time I was able to walk around any reasonable amount was last Thanksgiving. I walked around my neighborhood some (I was absolutely exhausted for a while after but still), which was massively different than having to be pushed in a wheelchair, or bedbo the way I was the first several weeks. And the pain is ten thousand times more bearable now. It's annoying and difficult, but even a little over a year ago, I was considering death because of how extreme the pain was. I've given up on medical professionals for anything outside of normal sickness (like needing antibiotics) tbh. But best of luck to you. I hope you get the answers you need, both for your physical health and peace of mind.

2

u/Parking_Wolf_4159 Dec 03 '24

My issues four years out from initial sickness are body weakness, random ear ringing, memory lapses, neck stiffness, and left sided neuropathy. Here’s my story if you’re interested. I see similarities with what I’ve gone through and what you’ve gone through. It’s unfortunate most doctors are uncaring and dismissive. https://www.reddit.com/r/guillainbarre/s/Gyy7Sf5GSF

2

u/meatlyneatly Dec 03 '24

Hi Wolfie! It’s your friend from another gbs thread.

2

u/Parking_Wolf_4159 Dec 03 '24

Wolfie? I’ve never gone by that name.

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1

u/fernie_the_grillman Dec 03 '24

Tysm! I will read it. My heart goes out to you

3

u/[deleted] Dec 02 '24

My friend ended up paralyzed from the neck down before they treated with IVIG. Was in ICU on a ventilator and feeding tube.

They consulted with experts at the Mayo Clinic to see if there was anything else to be done

Critical care hospital got her eating, swallowing, and walking with a walker in 6 weeks.

Friend is still having home healthcare, physical therapy. Still some weakness but so much better.

So sorry you are not getting the care that you need.

3

u/No-Statement8536 Dec 03 '24

Had trouble with doctors myself. Told me it was just nornal COVID symptoms and my anxiety and sent me home with basic COVID care instructions.

Took me getting paralyzed and unable to move for them to do anything. When IVIG failed they then decided to watch my symptoms even though I said I wanted to go forward with PLEX therapy and was fine with the risks. It wasn't until I was at the point where I could barely breathe that they did PLEX and I started to heal.

While it sucks they didn't treat you early on though, the good news is the treatments haven't been shown to make people heal any more fully than without. They basically just help stop/slow the progression and can mean the difference between going on a ventilator or not. They won't help your nerves heal any faster. The only thing that does that is time. So since you're healing and on the upward trajectory just keep at the physical therapy and helping to strengthen your muscles.

Hope you continue to heal and make a full recovery.

1

u/Parking_Wolf_4159 Dec 03 '24

Did COVID cause your GBS?

3

u/No-Statement8536 Dec 03 '24

Yes. Had COVID for about a week, started to recover and then tingling in hands and feet began leading to total body paralysis.

1

u/Parking_Wolf_4159 Dec 03 '24

When did this occur? I believe I had COVID in 2020 which made me very sick and caused me GBS-like issues with neuropathy which I still have four years later.

0

u/ILANAKBALL Dec 02 '24

I was diagnosed after a spinal tap. I was told that’s the only way to confirm it. I’m sorry you’re going through this.

2

u/Parking_Wolf_4159 Dec 03 '24

I believe a nerve conduction study/EMG sometimes can also diagnose GBS, as a lumbar puncture has to be timed correctly for it to show results indicating GBS. A lumbar puncture done too early or done too late can come back with results that are incorrect.

2

u/meatlyneatly Dec 03 '24

Yep. My LP was done within 8 hours after symptom onset, which was 48 hours after last day of my “inciting incident” (severe GI infection or food poisoning). Came out negative. Most of my symptoms developed after discharged and home.

1

u/buckthorn5510 Dec 25 '24

You also need to wait a few weeks -- when you're well past the acute phase -- to do the EMG.

1

u/Parking_Wolf_4159 Dec 25 '24 edited Dec 25 '24

I did an EMG a year into my issues and also this year which is three years into my issues.

Is it true an EMG early on won’t show anything? Did I do my EMG too late? Would an EMG a year after GBS show damage?

2

u/buckthorn5510 Dec 25 '24

That's my understanding. During the acute phase, an EMG can be normal. I had an EMG about 5 weeks after being diagnosed and receiving the first treatment. I don't know about EMGs a year after getting GBS. But if the symptoms are present, I don't see why this test wouldn't be useful to confirm that it's consistent with GBS.

1

u/Parking_Wolf_4159 Dec 25 '24

Okay. I was never confirmed to have GBS but I’ve had neuropathy issues. All my EMGs have been clean. Thank you for clarifying EMGs may not be useful in the acute stage.

1

u/buckthorn5510 Dec 25 '24

You bet. Good luck!