Was I misdiagnosed? Here's my strange GBS story.
December 20, 2017 at 1:31 am
Went on vacation and was hit with a mild cold. A few days later, hit with a 24 hour stomach bug I assumed was from undercooked meat. Returned home and the next day, I was slammed with vertigo. Was dizzy for days. I thought I had a ear cold. But my legs felt very heavy, like my shoes had bricks in them. And I kept shaking. The vertigo escalated, it was so severe I could not walk in a straight line. Dr said go to ER. ER said I had inner ear and sinus infection, though I felt well, aside from the severe vertigo. Could not explain heavy legs or shaking. Sent home.
The heavy legs continued. As the vertigo lifted, I noticed my thighs were severely weak. I thought Id pinched a nerve though I had no pain. By the next day, the weakness was into my calves and ankles. I could barely walk. Dr said go back to hospital. ER was confused, couldn’t diagnose, asked to admit me.
Spent most of my first admitted day wondering what was wrong. I could feel wild tingling from hips to toes and weird sensations in chest, throat, face, skull, hands, wrists. Tightening and moving sensations. Yet I had no pain and could force myself to walk. Shook so bad it was visible.
Doctors keep guessing I could have this or that. They promised to send me PT, never did. At that point I had decided I wanted to check out and go to another hospital because these guys seemed clueless and kept guessing different diagnoses, jumping around. I didn’t trust them. I refused a spinal tap for these reasons and had two rows with primary doctor over this, finally kicking him off my case. The neurologist said it doesn’t matter, we don’t need it, they had settled on GBS. Neuro had agreed it would help for me to walk around and to be active yet primary said I should not be ambulatory at all. He was contradicting the neuro, which made me angry. I had asked for second opinion and neuro said fine yet primary discouraged me and ignored me, pushing me to begin treatment immediately before the doctors had settled on a diagnosis. Then started demanding a spinal tap again at which point Id had enough of his antagonizing me and kicked him off my case. Sorry, I’m disgressing.
The next morning, the neuro spoke with me about treatment options. Before I could decide, my second opinion actually came in and said I did not have full blown GBS because my reflexes were slowly returning but believed I had a mild case that was resolving. Ran a few more MRIs to be certain of no spinal issues. I told him I had refused spinal tap, maybe that caused confusion. He said your symptoms do not warrant one, you should only be monitored.
The next day, the told me they believed the vertigo and the shaking was the beginning of the attack. They said the heaviness in my legs and my shaking was GBS, not caused by ear infection. The strange sensations had stopped and I had my ankles back, shaking slowed down. Docs said I was admitted 10 days after first attack and the BGS had peaked and should go away. It took another three weeks before I could walk without my legs quivering.
It’s been three months and I still have weakness in thighs, especially right thigh. Not sure if the GBS is still lingering or if it’s muscle or nerve damage. I have not gained back the weight I lost.
I’ve seen a lot of how GBS attacks but little about after effects. Does it ever truly go away? And i see everyone had pain but I had none. Did I truly have mild case of GBS?
I apologize for sounding confused because I AM confused about this! 🙂
December 20, 2017 at 1:45 am
To clarify my post…Neuro said fine to a second opinion…Primary discouraged from BOTH a second opinion and from being active.
December 20, 2017 at 11:06 am
Just to be clear-
1. No spinal tap.
2. No EMG.
3. No NCV.
4. No treatment.
From a Mayo Clinic discussion on diagnosing GBS: “Spinal tap (lumbar puncture). A small amount of fluid is withdrawn from the spinal canal in your lower back. The fluid is tested for a type of change that commonly occurs in people who have Guillain-Barre syndrome.
Electromyography. Thin-needle electrodes are inserted into the muscles your doctor wants to study. The electrodes measure nerve activity in the muscles.
Nerve conduction studies. Electrodes are taped to the skin above your nerves. A small shock is passed through the nerve to measure the speed of nerve signals.”
And then, also from Mayo Clinic- recovery- “Although some people can take months and even years to recover, most people with Guillain-Barre syndrome experience this general timeline:
After the first signs and symptoms, the condition tends to progressively worsen for about two weeks Symptoms reach a plateau within four weeks Recovery begins, usually lasting six to 12 months, though for some people it could take as long as three years
Finally, from Mayo Clinic: “There’s no cure for Guillain-Barre syndrome. But two types of treatments can speed recovery and reduce the severity of the illness”
December 20, 2017 at 3:41 pm
This doesn’t help me, lol.
I know what the tests are, none of tbe latter were suggested. I refused spinal tap. They diagnosed based on presentation and escalation of symptoms. They used MRI to rule out dystrophy diseases, other than that, no testing. I asked for a second opinion BEFORE starting treatment who told me I had a mild version of GBS and only needed to ne monitored.
I feel as though you’re faulting me for the lack of testing or treatment. It took them four days to decide on GBS and then another specialist overruled them.
December 20, 2017 at 3:42 pm
Why were you refusing to have the spinal fluid test? This is a standard diagnostic aid for GBS.
December 20, 2017 at 3:46 pm
Because 1, I didnt trust their diagnosis, they jumped around and the two doctors kept wildly contradicting each other. 2. I have lumbar disc injuries and not worth the risk. My neuro agreed.
December 20, 2017 at 3:50 pm
The doctors couldn’t decide whether the GSB was escalating or resolving… I told the primary my reflexes were coming back in my knees and strange sensations slowing down, he ignored me. Neuro listened, said we do need that second, outside opinion. And his opinion turned out to be different from theirs. Was very scary and frustrating.
December 20, 2017 at 3:53 pm
At this point all that doesnt matter…. Im trying to figure out if lingering weakness is just the GBS running its course or if its still active. Im still learning about this and trying to learn. I dont see a neuro for follow up 6 weeks. Trying to learn as much as I can until then.
December 20, 2017 at 4:55 pm
I have/had what I consider middle-of-the-road GBS. Not mild, but I spent more time in “the hospital” than I ever thought possible for a healthy, athletic adult. (Didn’t see my house or critter for 2 months.)
I don’t remember any pain prior to the spinal tap (had more of the numbness and tingling like a caffeine OD), but I had a previous minor back injury that usually didn’t cause me any pain unless I laid around too much, which, by the time I got the spinal tap, I’d easily passed. To this day, 5 years after diagnosis, the only physical pains I get are in places I’d previously injured: nearly-frostbitten toes, back, shattered ankle, cracked ribs. Full-blown asthma where I only had exercise-induced asthma (not in need of inhaler, just awareness). ADD is worse…
“It” doesn’t seem to be going away…just taking a backseat.
December 20, 2017 at 8:37 pm
That’s awful. 😓
I have three dislocated discs in the lumbar and sacrum and compression of the L4 root and L5 root nerves. 😓
Docs said GBS would resolve after a few weeks but I guess its still there, lurking!
December 20, 2017 at 10:46 pm
Neuropathies are often difficult to diagnose. The spinal fluid test is used to narrow the possibilities. You should have more confidence in the diagnosis when there are tests to back it up.
As for the disagreement between doctors, the procedure seems a little confused to me. The emergency department is not the best place to get a neurological diagnosis. The function of the ED is to stabilize the patient, treating problems demanding immediate treatment, and diagnose to the extent necessary to decide where to transfer the patient.
The way it was done in my case makes more sense. My family doctor didn’t know what was wrong, but at the second appointment he realized it was neurological because of my loss of knee reflex. Right away he referred me to a neurologist, and he stayed out of it after that. The neurologist put me in hospital the same day he saw me. The diagnosis was not resolved at that point. After the spinal fluid test it was confirmed as likely GBS, but a few weeks later it was changed to CIDP. I was not misdiagnosed. Diagnosis is a process which sometimes takes awhile to arrive at the best conclusion.
December 20, 2017 at 10:52 pm
If you are not getting progressively weaker, lingering weakness is likely just residuals. It takes a long time (one to three years) to recover from GBS, and some residuals may be permanent.
December 20, 2017 at 11:52 pm
The diagnosis wasn’t made in the ER. The ER doctor’s exact words were, “I am at a total loss. I have no idea what this is”. The ER admitted me to the hospital to try to find a diagnosis. I regret agreeing to it.
The diagnosis was made while I was an inpatient for five days. The doctors went back and forth for days – with each other – on a diagnosis. Finally settled on a full blown GSB diagnosis but a second opinion later that day said I had a mild version. That doctor said a spinal wasn’t even justified given my symptoms, so I was certainly justified in refusing. (Not to mention my lumbar and sacral injuries.) And told me I was free to go home.
So I spent three days being told that A) I was dying and 2) that I needed blood transfusions or chemo just to be told, nah, it’s not full blown GBS, so you you can go home, no treatment needed. I Wanted to kill someone! My case was not handled well at all. Hence, I have some misgivings about the original AND final diagnosis.
My lack of confidence in the doctors was based on their behavior towards each other and their contradicting each other. Example: The neuro encouraged me to get up and walk while the primary told me to be immobile. The problem wasn’t the neuro, the problem was the primary. The only issue that gave me pause about the neuro was she couldn’t figure out if the GBS was escalating or resolving. She said mine seemed “sneaky”. SHE didn’t want to start treatment right away because she couldn’t figure out the GBS course, nor had she decided whether or not it was in fact GBS. The primary demanded I choose a treatment immediately.
Once I had him kicked off my case, progress was made. He was resisting my second opinion… Had I not doubled down on him and removed him and insisted on a second opinion, I would have treatments I did not need. I can’t help but wonder if I was misdiagnosed. I was told the GBS would resolve in weeks but that’s obviously not the case. (The primary I am referring to is not my family doctor – it was one of the doctors in the hospital.)
Sorry for the rant, it doesn’t matter how I am at this point I suppose, Im just trying to understand this. Do I be worried? Just let it run its course? Do i need monitoring? I don’t know. I’m thoroughly confused and …Yes, a bit frantic.
It’s three months later…Some days the legs are very tired and weak, some days seem fine. Some days they go from fine to bad in a matter of hours… And several times I thought the full blown attack was coming back but it settled down. So, after being told this would “just go away on is own”, here I’m learning that it doesn’t, that it stays! Forever!
December 21, 2017 at 9:10 am
It can be difficult to tell whether GBS is advancing or declining. I was given a five-day course of IvIg in hospital, then sent to rehab. Within a week I was back in hospital because I was getting weaker. After another loading dose, I went to rehab again. I was back in hospital in a week, where I remained for a few weeks before finally starting recovery. This was nobody’s fault — it’s just the nature of the disorder. Sometimes it progresses slowly, sometimes not.
December 25, 2017 at 6:26 pm
I would find another hospital or Dr. I had 2 spinal tap, they first diagnosed me with calcium defiency and drink qt of milk. Next day I couldn’t walk. There was NO fancy treatment to help me, just therapy. If you indeed have GBS, you should be treated to assure a better recovery.
December 26, 2017 at 10:45 pm
I did go to a difffent emergency room today. Second trip in a week. First ER had no clue, this ER said my current issues… cold intolerance, pressure in head, weakness, constant tremors… are neurological. Seemes to think it was tied to GBS or a relapse. Said see a neuro but Im not in any danger… of like, dropping dead. Lol. I’m starting to think this is all in my head!
December 30, 2017 at 11:18 am
I too was amazed at how hard it was to be diagnosed. The first emergency room I went too, gave me a shot for pain, it only lasted a few minutes. A doctor came in later in the evening and told me all the tests they did came back fine and he was releasing me. I got full blown angry, I still felt like I was dying. The very next day I was in another emergency room, different hospital. My wife tells me now, that my BP was like 200 over 140, couldn’t really tell you because I can only remember bits and pieces. I was transferred by ambulance to another emergency room in another city. By that time I had lost my speech my hands and fingers, my back muscles, could not swallow or close my eyes. Finally got the treatment I needed at hospital #3. I can understand your frustration. Unfortunately here in the States, the insurance companies pretty much play the music the doctors have to dance to. A spinal tap is part of the diagnosis the insurance company will except for treatment. Does this make a little more sense?
December 30, 2017 at 2:49 pm
James, the emergency department is not the best place to get diagnosis of a neuropathy. A neurologist is required. Did your personal docter send you to emergency?
January 2, 2018 at 1:14 am
I refused a spinal. I will alwsys refuse. Too many disc and nerve damage to risk it. The hospital agreed to treat me without since it appeared the GBS was accelerating though it changed course and started to resolve.
Had a mild relapse and met with neuro. Naturally begged for a spinal. I set three conditions. 1. General anesthesia. Otherwise I will freak out and hurt someone and myself. I have before, I know I would again. 2. If I wake up with a weeks worth of a migraine because some idiot hit the wrong area, which is what causes the headaches in the first place, I will scream every single second until the migraine is gone. 3. If I get any more damage to my nerves or discs, I will murder the offender with my bare hands. Naturally, she couldn’t agree to a of my terms. She fully agreed to GA and would push the insurance to pay for it but could not guarantee no migraine or no damage. So nope. Nopity Nope. I may never get a full diagnosis due to this and I accept that but I know full well they can work around it. My insurance can kiss my royal American. They’ve demanded stupid, invasive stuff twice before and lost both times in litigation. If I have to, I’ll take them on a third time.
January 2, 2018 at 1:15 am
I read my post back to myself and I sound cranky though I don’t mean to, lol
January 2, 2018 at 1:21 am
This relapse, or whatever it was, started just like the first attack. Severe vertigo and severe weakness followed by attacking the nerves in my legs. The only difference this time is it attacked my thigh instead of attacking both calves and both thighs in both legs and this time it is resolving quickly. Doc thinks it’s something other than GBS because GBS doesn’t behave this way. Whatever it was, it’s pretty much went away. I had residual weakness in right leg from first attack and I assume it will still be there when this attack fully resolves. Doc says there shouldn’t be any weakness at all.
January 2, 2018 at 2:03 am
I forgot to add severe tremors!
January 11, 2018 at 4:16 pm
Read about President Franklin Roosevelt . He most likely had gbs not polio. He was not given a spinal tap. Sounds a little bit like your case
January 11, 2018 at 9:44 pm
My husband contracted GBS 22 years ago. Fortunately he was diagnosed with in hours of the onset of weakness. With IVG treatments after a spinal tap confirmed the Drs. Unfortunately my husband has been challenged for years now with reacurring weakness. We live our lives as normal as possible but the reality is GBS is different for all who contract the syndrome. As my husband ages his pain is mostly felt in his feet because his weakness in his legs require him to wear braces. Get another opinion if you are not comfortable. The new normal for you may change. The GBS Symposium in or around 1999 was an eye opener. They had wonderful professionals that could answer most questions.if you get a chance to attend,we found it helpful.
Stay positive, it is helpful in your journey.
January 24, 2018 at 12:44 pm
GBS doesn’t ‘lurk’, it’s not a virus or anything – it’s your own immune system somehow getting the signal to attack your own nervous system. That runs its course and then is over and done; the lingering complaints you have, if you did indeed have GBS, are results from the damage done to your nervous system by the ‘attack’. GBS harms a protective layer around your nerves, resulting in a worsening (or failing) of the signals travelling to your muscles. That damage can heal, depending on the person, age, severity of the attack (low in your case, luckily), but it is possible to have residual effects that don’t go away. But these after-effects are the result of damage already done, you don’t need to worry about GBS still being there or anything. There are some cases of a 2nd case of GBS in the same person, but that is extremely unlikely.
As for your choices in your treatment: GBS is extremely rare. The chance of a doctor encountering it during his career are not high, so some confusion and disagreement among doctors is normal, and is actually something that should be encouraged: they are just making sure there is no scenario they are not considering. (check out different hospital series on tv – they do this all the time). Of course, they should do this in private, not in front of you, and certainly not if they see it makes you nervous.
While I agree you should always think for yourself instead of blindly following a doctor’s advice – they are your best shot at getting better. A spinal tap is essential to quickly rule out other causes and get you treatment before the condition worsens. You had a very mild case – but in more severe cases, a quick diagnosis can be the difference between life and death.
Anyway, my main point here is: your residual effects will decrease, and even as long as 2 years from now your condition can still improve. There is no reason to worry now, your body just needs to repair the damage done.
February 1, 2018 at 11:35 pm
I was finally, properly diagnosed today. My new neuro knew exactly what it was the second I walked into his office: Sensory Polyneuroapthy, a form of GBS. I was diagnosed via EMG and NCS, not spinal tap, which I had refused. This neuro said i did not even need one and the NCS and EMG were the golden standard of diagnosis. So…My stubborn instincts were correct. I just had to find a doc who knew what the hell he was doing. He was also smart enough to treat me empirically with steroids to calm some of the massive inflammation which helped immensely.
I DO have a mild case…But a mild case that’s went untreated for nearly 5 months and spread into my hands and arms. The good news is, it can be tamed and shouldn’t worsen. Bad news, it’s going to take time.
February 25, 2018 at 11:21 pm
I wonder if you are still having issues with it. From what I have read it could very well be GBS because we are all different and I have read on other sites that a lucky few do get off with no pain. Especially lighter cases.
Some people go into coma, some don’t. All depending on ourselves and our immunity how bad each of us gets it.
If you are not sure it’s stopped tho you should get checked. There is supposedly a certain protein in body under attack and also something that shows up in the spinal tap.
There is also rare but possible chance of another event. Be sure.
I had severe pain at first, weeks before the leg weakness. Some get pain after paralysis. I am a year out. Still in a lot of pain and discomfort even to sit and laying down. Still trying to walk unassisted. Good luck and make sure.
February 25, 2018 at 11:55 pm
Ha. A read through most of the first page then replied and then I saw your post saying it’s been answered and diagnosed. Good luck with it and yes, it’s been a year for me. Supposedly doc thinks in this year if I keep at it I could be walking on my own without a walker. You might recover fully faster having had a lighter case of it.
March 2, 2018 at 12:57 am
I was misdiagnosed too by my GP. Having general weakness. But being dissatisfied I searched the internet and concluded it was a neuro problem. Was mentally ready for GBS and painful tests. Booked an appointment next day, got diagnosed with GBS after LP, EMG etc and the day after my plasmapheresis started. Stayed in hospotal for a week and able to walk unaided a day after. My conclusion is the earlier the treatment starts less severe the plateau phase is and less time required for recovery.
March 2, 2018 at 1:53 pm
Yes, generally, earlier treatment leads to better recovery.
May 24, 2018 at 4:23 pm
Strength to everyone!!
If your condition is not worsening that means GBS is not coming again or it is still there. Yes, after effects will be there and your body will take its own time to heal. I would suggest try to train your body and take good amount of rest, your body will get used to it.
For me IVIG started on 3rd March (after 2 day of admission, I was completely paralysed). Doctors were not able to diagnose because all test came negative (LP and nerve conduction test) and non of my symptoms were same as GBS. I was in hospital for ~30 days and today after 2 and a half months, I’m able to walk, sit and stand on my own. The journey started from able to stand for 1 min to walk for 30 mins and on.
September 2, 2018 at 3:08 pm
I developed a mild form of GBS, too. Also had (have) some vertigo, stomach issues along with peripheral neuropathy in my lower extremities. This was over 3 years ago and I still have some lingering symptoms. I had a spinal tap that was negative for the proteins. This was because I wasn’t diagnosed for 5 months (doctors told me they had “no idea”, too) and this test gets less accurate over time. I also had IVIG which was also not effective since it was too long after I developed it. My neurologist at Duke did the EMG and NCV which documented I had GBS in her opinion. Only treatment was PT for vertigo and Rx’s (neurontin, lyrical, and tramadol for pain). At a support group a neurologist stated he had treated GBS for over 35 years and had documented over 50 distinct types of GBS/CIDP, the point being that it’s a syndrome, not a disease.
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