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Living with Polyneuropathy CIDP, GBS, & CMT

Curious how everyone contracted GBS.....I contracted GBS after a stomach virus. How did you contract GBS?


#21

I also did not have a known infection...but of course you can have a virus and your immune system can be fighting something and you be asymptomatic. Viral or Bacterial infections are the most common primary factors. The flu shot is a virus introducing to the system which why once you have GBS you should avoid flu shots.


#22

I had a severe bout of flu and the GBS started a few days after I had recovered from that.


#23

Hi

I had a mild stomach virus and flu type symptoms over Christmas 2012. I recovered enough to returned to work after the holiday but never felt 100%. I started having tingling sensations and numbness a few weeks later and then had severe and rapid deterioration which resulted in hospital admission and diagnosis of GBS on 14th Jan 2013.

I've heard that some have claimed a link with vaccinations and GBS by my doctor has told me this was based on one study which he thought over stated the link and it hasn't been conclusively proven. I didn't have my flu shot (partly due to this concern) until last year and, although currently experiencing a resurgence of some symptoms the recent problems and having flu jab are too far apart to be likely cause.


#24

I had very severe flu. Like the most painful aches and pains ever.


#25

I had what I thought was a bad cold about a week before, but not sure if it had anything to do with it. I did not get a flue shot yet that year, nor have I had one since. I had always gotten one in previous years.


#26

As they say with GBS no 2 patients are alike & it’s amazing all the different ways you all have contacted GBS. I wish doctors would read this board. I had various tests done before GBS came on full force & everything came back fine. Then a month later boom & you all know the rest.


#27


Jazz said:
As they say with GBS no 2 patients are alike & it's amazing all the different ways you all have contacted GBS. I wish doctors would read this board.

#28

I had a perfect storm sequence of events some years ago. Had an undiagnosed untreated GI issue despite being followed by a GI MD + underwent an elective corrective outpatient surgery (hernia).. Didn't help when the Neuro I saw x2 in 5 days said I had Fibromyalgia and told me to go find a Rheumatologist as he (the so called Neuro) didn't seemingly care or want to bother helping me. A Rheum doesn't treat GBS. The Neuro the Rheum sent me to see told me at the end of the incredibly painful EMG/NSC testing he did he thought I had GBS but refused to allow me to transfer my care to him- keeping his Rheum buddy as a referral source was more important than helping me even though he had ID' a definitive Neuro condition as the diagnosis. As a result, I totally lost the narrow window of opportunity to have been tried on IVIG and/or Plasmaphoresis (the 2 standard treatment options) to try to slow down or prevent the degree of ultimate nerve damage I did sustain.

By the time I found a Neuro willing to see me, 4 mos had passed and it was far too late to be tried on either option. He retrospectively correctly diagnosed me based on my history+ the test results I had had 4 months prior. Not a single Neuro anywhere in the large county I reside in was willing to see me (had 2 tell me over the phone they didn't treat anyone with any Neuropathy- how bizarre is that given how this condition initially presents then gathers steam as things rapidly go to hell in a handbasket!).

So bottom line, I went thru the whole miserable profoundly incapacitating experience on my own, at home, getting worse literally by the day. There were days I wasn't sure I would wake up the following AM and it got to the point where I really didn't care. And no, I wasn't overtly depressed. As a protective mechanism my brain shut down as I became grossly overwhelmed physically to keep trying to find anyone to help me. Suffice to say, irreparable nerve damage was done and I was left with chronic pain as a result.

Be advised I don't live in a small town or miles from any tertiary centers. I live in a highly populated State where there are many many MDs available. Just none that wanted to help me or had the intelligence to recognize what was happening to me during a time when something could have been tried to have prevented or minimized the damage that was ultimately done. As a result of the total lack of appropriate medical care received, I also ended up having to drop out of the work force Years earlier than I ever wanted to as well so compounding everything I ended up taking a big time hit financially for added good measure, something I can never regain.

My Advice: go to a Tertiary Hospital closest to wherever you live and don't leave until you have a Neurologist examine you. Be very clear as to your symptoms, when they began, how rapid your physical deterioration has become and insist something be done (as in getting admitted). Barring that, asked for a detailed written response as to what signs/symptoms were needed before any help could be provided to you. Just don't go after hours, on weekends or in the middle of the night if at all possible. If you don't have transportation, call 911. By law, paramedics have to take patients to the nearest ER to be evaluated. Just be close to the Tertiary facility so that you end up there.

PS. Tertiary is a University level based teaching facility. NOT a community hospital.


#29

That's a great one, Charlotte! I think it would look good on a t-shirt, don't you?

Seenie


Charlotte said:

I saw a funny meme today that said " autoimmune disease, because the only one tough enough to kick my ass is me!" So true! Anyone battling GBS has to be hardcore, bad to the bone tough. Keep fighting


#30


I agree!


ModSupport said:

That's a great one, Charlotte! I think it would look good on a t-shirt, don't you?

Seenie


Charlotte said:

I saw a funny meme today that said " autoimmune disease, because the only one tough enough to kick my ass is me!" So true! Anyone battling GBS has to be hardcore, bad to the bone tough. Keep fighting


#31

see attached

13-Grizzly.jpg (183 KB)

#32

Flu shot.


#33

oh my god! I can hardly believe you are alive! I cannot say enough about patient advocacy, coordination, and continuity of care.

I was no where near as bad as your case when my general practitioner decided because after brain MRI he couldn't diagnose multiple sclerosis (MS) that he couldn't help me because I was "running away with my symptoms". I looked up a rheumatologist because the only abnormal lab value I could find was for an ASO (antibody) titer was super high....this is usually the case follow rheumatic fever or scarlet fever or something. So I called a new Rheumo in town and she agreed to see me first thing. She referred me for EMG/NCS and c-spine MRI. Neuro came in to help tech complete NCS because I was crying in pain...my sister and I work in healthcare so we asked him to look at my face...BellsPalsy... he did then asked why i was not his patient...I said wait listed for 2-3 weeks but thought I might die. He fit me in his schedule at that moment and spent 1 hour with me. NExt day spinal tap & next day IVIG (150g in 2 days).

That was 3.5 years ago....have had 2 large exacerbations and many small ones..struggle every 3-4 days depending. Overall fairing better than most.

LJ said:

I had a perfect storm sequence of events some years ago. Had an undiagnosed untreated GI issue despite being followed by a GI MD + underwent an elective corrective outpatient surgery (hernia).. Didn't help when the Neuro I saw x2 in 5 days said I had Fibromyalgia and told me to go find a Rheumatologist as he (the so called Neuro) didn't seemingly care or want to bother helping me. A Rheum doesn't treat GBS. The Neuro the Rheum sent me to see told me at the end of the incredibly painful EMG/NSC testing he did he thought I had GBS but refused to allow me to transfer my care to him- keeping his Rheum buddy as a referral source was more important than helping me even though he had ID' a definitive Neuro condition as the diagnosis. As a result, I totally lost the narrow window of opportunity to have been tried on IVIG and/or Plasmaphoresis (the 2 standard treatment options) to try to slow down or prevent the degree of ultimate nerve damage I did sustain.

By the time I found a Neuro willing to see me, 4 mos had passed and it was far too late to be tried on either option. He retrospectively correctly diagnosed me based on my history+ the test results I had had 4 months prior. Not a single Neuro anywhere in the large county I reside in was willing to see me (had 2 tell me over the phone they didn't treat anyone with any Neuropathy- how bizarre is that given how this condition initially presents then gathers steam as things rapidly go to hell in a handbasket!).

So bottom line, I went thru the whole miserable profoundly incapacitating experience on my own, at home, getting worse literally by the day. There were days I wasn't sure I would wake up the following AM and it got to the point where I really didn't care. And no, I wasn't overtly depressed. As a protective mechanism my brain shut down as I became grossly overwhelmed physically to keep trying to find anyone to help me. Suffice to say, irreparable nerve damage was done and I was left with chronic pain as a result.

Be advised I don't live in a small town or miles from any tertiary centers. I live in a highly populated State where there are many many MDs available. Just none that wanted to help me or had the intelligence to recognize what was happening to me during a time when something could have been tried to have prevented or minimized the damage that was ultimately done. As a result of the total lack of appropriate medical care received, I also ended up having to drop out of the work force Years earlier than I ever wanted to as well so compounding everything I ended up taking a big time hit financially for added good measure, something I can never regain.

My Advice: go to a Tertiary Hospital closest to wherever you live and don't leave until you have a Neurologist examine you. Be very clear as to your symptoms, when they began, how rapid your physical deterioration has become and insist something be done (as in getting admitted). Barring that, asked for a detailed written response as to what signs/symptoms were needed before any help could be provided to you. Just don't go after hours, on weekends or in the middle of the night if at all possible. If you don't have transportation, call 911. By law, paramedics have to take patients to the nearest ER to be evaluated. Just be close to the Tertiary facility so that you end up there.

PS. Tertiary is a University level based teaching facility. NOT a community hospital.


#34

TJ here. I hesitate to jump in here BUT A couple things. One of the most frequent practitioners to treat GBS is a rheumatologist. He infact is the only specialist who is qualified to seperate GBS from some of the other demyelinating diseases. Especially the auto-immune variety. He frequently consults with a neurologist. When it comes to treatment the rheumie in many if not most large medical centers is the expert when it comes to the immuno suppressant medications.

And yes few if any neurologists treat neuropathy/neuralgia. That is more frequently done by other specialties. (Psychiatry, physiatry, anesthesiologists, and surgeons.) Pills don't fix neuralgias. But GBS has very little if anything to do with neuralgia. Please be careful when using medical terms. Demyelinating Polyneuralgias which we are concerned with in GBS is a very different animal than neuropathy/neuralgia.

When you find a rheumatologist and neurologist who work well together, you have found gold. As far as window for IVIG etc being lost, I'm not aware of any studies (except one from 2010) that even broached the issue. The 2010 study found no relationship largley because time to DX for GBS varied so much. Can you point us to the information? This is important, L G because your post indicated that after five weeks(then 12), the most frequent and generally most effective treatments are worthless. Our members know better, but some of the newbies don't.


#35

Thank you for your reply but I do disagree. GBS is a Neurological condition that has autoimmune overtones to it. The Rheum I did find because I was given no other choice offered absolutely No information or any treatment options whatsoever. This despite the fact his Neuro MD buddy up the street who did the actual NCS/EMG and who flat out told me he thought I had GBS made no recs either and refused to take my case despite the rapidity of the symptoms that appeared by the day. I hope you can see why my experience was so very Bad for me- no one picked up the gauntlet. I was given an incorrect DX and by the time that occurred, things were very very slowly beginning to improve. It is hard to be able to advocate for oneself when no one listens or refuses to take the case once a DX is actually made. By the time I found my Cedars Neuro he told me it was far too late to try anything at all.

My Neuro at Cedars, the only one who correctly identified what I actually had, was very clear in stating I had had an acute variant of GBS. Crystal clear. He has seen many patients with GBS and has directed their in hospital care as well so I would say he is very well qualified to speak about GBS in and of itself. He also informed me, very clearly, there is a window of time re: trying either IVIG or Plasmaphoresis to try to minimize the damage GBS causes. In my case, I didn't find him until 4 mos after the initial presenting symptoms which he told me was far too late to try either treatment.

It is sad the treatment years ago and the treatment now is the same- there's been no new developments whatsoever for GBS. Probably because it is rarely found/seen and yes, it does require a Neuro to even recognize GBS in the 1st place. In my case, that never happened. And no, I do NOT believe the 1st Neuro I saw when the symptoms of GBS were clearly in place and picking up speed knew what he was doing. He offered no assistance whatsoever I may add in recommending anyone to do the work up needed so that was Failure #2 in my book.

Obviously, back when this hit me like a runaway freight train, Neuro's and Rheums did NOT work together- or at least no one in the large county I reside in did. As the patient rapidly developing worsening symptoms by the day, I retrospectively found that akin to Patient Abandonment. Having had to undergo the entire miserable GBS progression, alone and with no medical guidance because I couldn't find anyone to take my case... yup, I would say that amounted to abandonment.

Hopefully things are better these days for people currently facing GBS as it evolves for them. Suffice to say, there were no websites like this one either where people could share their experiences, the good, the bad and the downright ugly when I had GBS. . PS. The Cedars Neuro was the only specialist who ID'd the GBS and yes he was very clear in informing me it was a demyelinating polyneuralgia. And yes, I was diagnosed prior to 2010. And yes, I am qualified to use medical terms given my profession.

Thank you for taking the time to respond.


#36

I was referred to a rheumatologist by a neurologist who had no clue as to what I was experiencing. The rheumatologist said it looked like a reaction to the Tetanus vaccine (like a mild case of Guillain Barre) but he said he didn't treat this or understand why I was even sent to him. However, I was able to get in with him before I ever could see the neurologist for an appointment early on and he did draw labs that were invaluable to me later down the road. I did receive positive support from him but no treatment other than an anti-inflammatory which didn't help very much. There was really no communication between the two doctors and I have yet to find a neurologist experienced with GBS who could help me. The neurologist did refer me to a great PT who helped me tremendously and I found another great PT to help me with balance problems. I have done pretty well in recovery by trial and error with added activity but would still like to find a good neurologist to follow up with who is familiar with GBS. Feedback from this site helped me get through those long months of suffering (and tough times in recovery even now) when I so desperately needed experienced medical support and compassionate knowledgeable care.


#37

Then you should know that demyelinating polyneuralgia is NOT an interchangeable term with neuralgia. Its a shortcut some take but shouldn't. Also you might be interested to know there has been tremendous work done with GBS including the identification of several peptides that have found inflammatory infiltrate indicating an autoimmune demyelinating process. There isn't much question about the auto-immune connection of GBS anymore. While the process's of IVIG or Plasmaphoresis remain the same, their application is much different. They have little or no effect on "damage" but are used primarily for symptom control. The work being done on GBS is primarily coming from immunology.

You did indeed have bad experience that should NEVER have happened. One would HOPE its better. But you are right sites like this can help and shared experiences one of the best.

Please forgive me if I seem oppositional, I'm not. I'm enjoying visiting with you. and am looking forward to your posts. One thing I try to encourage on all the sites however is to try NOT to medicalize anything (nor should patients when talking to their docs.) It leads to a lot of confusion. (I knew what you meant BTW with "neuralgia" but did the Docs who say they don't treat it?)

LJ said:

Thank you for your reply but I do disagree. GBS is a Neurological condition that has autoimmune overtones to it. The Rheum I did find because I was given no other choice offered absolutely No information or any treatment options whatsoever. This despite the fact his Neuro MD buddy up the street who did the actual NCS/EMG and who flat out told me he thought I had GBS made no recs either and refused to take my case despite the rapidity of the symptoms that appeared by the day. I hope you can see why my experience was so very Bad for me- no one picked up the gauntlet. I was given an incorrect DX and by the time that occurred, things were very very slowly beginning to improve. It is hard to be able to advocate for oneself when no one listens or refuses to take the case once a DX is actually made. By the time I found my Cedars Neuro he told me it was far too late to try anything at all.

My Neuro at Cedars, the only one who correctly identified what I actually had, was very clear in stating I had had an acute variant of GBS. Crystal clear. He has seen many patients with GBS and has directed their in hospital care as well so I would say he is very well qualified to speak about GBS in and of itself. He also informed me, very clearly, there is a window of time re: trying either IVIG or Plasmaphoresis to try to minimize the damage GBS causes. In my case, I didn't find him until 4 mos after the initial presenting symptoms which he told me was far too late to try either treatment.

It is sad the treatment years ago and the treatment now is the same- there's been no new developments whatsoever for GBS. Probably because it is rarely found/seen and yes, it does require a Neuro to even recognize GBS in the 1st place. In my case, that never happened. And no, I do NOT believe the 1st Neuro I saw when the symptoms of GBS were clearly in place and picking up speed knew what he was doing. He offered no assistance whatsoever I may add in recommending anyone to do the work up needed so that was Failure #2 in my book.

Obviously, back when this hit me like a runaway freight train, Neuro's and Rheums did NOT work together- or at least no one in the large county I reside in did. As the patient rapidly developing worsening symptoms by the day, I retrospectively found that akin to Patient Abandonment. Having had to undergo the entire miserable GBS progression, alone and with no medical guidance because I couldn't find anyone to take my case... yup, I would say that amounted to abandonment.

Hopefully things are better these days for people currently facing GBS as it evolves for them. Suffice to say, there were no websites like this one either where people could share their experiences, the good, the bad and the downright ugly when I had GBS. . PS. The Cedars Neuro was the only specialist who ID'd the GBS and yes he was very clear in informing me it was a demyelinating polyneuralgia. And yes, I was diagnosed prior to 2010. And yes, I am qualified to use medical terms given my profession.

Thank you for taking the time to respond.


#38

I really feel sorry for those here who have had such a bad time trying to find a health professional who can identify and treat in timely manner, without having to waste time when, as we here now know, timely diagnosis and treatment seems to mean the difference between getting over the affects of GBS quickly or suffering for years.

Most of us on this board are living in first world countries, with purportedly the worlds highest possible health standards, but in some of these same places there appears to be a real problem with getting a matching high level service to the individual.

I really thought that my treatment was standard for a developed country, whereby I fell ill, got an ambulance to the hospital, was diagnosed within an hour and immediately started on infusions. After 2 weeks, out of hospital and onto a therapy program to get me back to strength.

All of this at no cost to me apart from the normal Medicare and ambulance levy as part of my taxes.

Now whilst I fully appreciate GBS hits only about 1 in 100,000 which makes it relatively unusual, it surely isn't beyond a modern health system's ability to diagnose quickly what is happening.

After all, whilst awaiting my ambulance to come I googled my symptoms, and up came page after page of GBS answers, and in fact my diagnosing doctor in the hospital emergency department told me he did exactly the same, and he wasn't ashamed, as he pointed out in the past he would have consulted a text book, which would have taken longer, (and been out of date) so why not use technology that we are blessed with these days.


#39

The problem is (defending the medics a bit) is that GBS is a Zebra and most polyneuropathy is a horse (its the old thing every resident taught: "When you hear hoofs, think horses not Zebra's) while GBS occurs as noted 1:100,000, Severe Polyneuropathy actually occurs 1:1000 making it pretty common. While diagnostic hindsight is 20:20, there are many reasons for GBS symptoms (and not taking anything away from GBS) that are far more emergent and serious. GBS almost always gets better after the crisis (weeks to years) and generally without serious after effects (mild weakness the most common) The horses can be permanent or fatal.

In the US at least, showing up in the ER in the best of circumstances will only get you stabilized. Rarely will you get a diagnoses. DX for most conditions only comes with persistence and $$$$. We can and should do better. Our physicians are so uberspecialized, they can't see past their own nose. Fortunately team work is becoming more common.

TJ


#40

My first visit to the ER ended with a diagnosis of a pinched nerve and a prescription for steroids. Only after a fall the next day and a return trip to the ER being pushed in a wheelchair resulted in a GBS diagnosis and subsequent testing and treatment. I had ARDS also which complicated things and decreased my chance of survival. Doctors are trained to look at the most likely cause for symptoms before going for the exotic.

As for neuralgia, I’ve had neuralgia in my scalp off and on most of my life, usually when fighting off some kind of infection. My neuralgia from GBS is a whole different animal.