Can "residuals" increase post-GBS? Or do they always decrease?
AnonymousJanuary 31, 2009 at 5:53 pm
My bout with GBS was almost 2 years ago now, and I’ve improved by leaps and bounds over the past year especially after my doctors discovered the proper combination of meds and secondary diagnoses. The residuals I have that have neither increased nor decreased over the past year are:
-static in my vision
-pins & needles in my hands and feet at all times
-recurring weakness/partial numbness in my arms/hands, face, and legs/feet with fatigue or infection
-slurred speech with fatigue
-decreased lung capacity with fatigue or infection
-occasional skin sensitivity or burning sensations on my skin confined to a particular area (but rarely the same area from one time to the next)
-orthostatic issues that are now being treated with medication, but which still give me occasional trouble
But then I have a couple of symptoms that are actually getting WORSE as time goes on:
-tremor in my right hand is getting more exaggerated
-twitches that started in my fingers are now becoming large jerks in my finger muscles, and now twitches are all over my body (arms, legs, chest, abdomen)
-buzzing feeling in my chest
The first list doesn’t really concern me because I’ve just decided that these are all things I’m going to live with for the rest of my life, so I’ll just have to accept them. But the second (short) list gives me pause because there seems to be a noticeable progression in the severity of these symptoms.
Has anyone else experienced a worsening of neuro symptoms this far into recovery and had a reassurance from their neurologist that this is normal? Of course I’m going to mention this to my MD at my next appointment, but I’d still like to hear others’ experiences as well.
AnonymousJanuary 31, 2009 at 8:14 pm
Hi Suzanne: Unfortunately residuals can come at any time. You can get new ones or old ones come back or get worse. Some are beginning to think there is a post GBS syndrome in which symptoms can worsen many years after the disease itself. Whether this is true or not residuals can certainly worsen with time. I have some residuals I have all the time, some come when I am very tired, and some have gone away. So maybe you have overdone it in some way lately. Having said that, if you think your residuals are getting dramatically worse I would call the doctor sooner than later. It could be something else besides residuals. However, as I said, it is not unusual for people to report new residuals or old ones worsening. You might do some reading of previous posts about residuals as there has been a lot written by many people. I gave a talk about residuals that has been posted if you look up on the forum under residuals. Always good to check with the docs though. Jeff
AnonymousFebruary 1, 2009 at 9:45 am
You do not mention the other diagnosis the doctors have given you. GBS residuals can be more or less over time and can completely go away and reappear later in life. Unfortunately only a few studies have been done on the long term effects of GBS. But, they are being done. I was totally paralyzed and on a respirator and received no treatments when I had GBS. At that time they just tried to keep you alive, so I do not know about medications or treatments that they use today, however, you might want to check on the side effects of any meds you are taking.
AnonymousFebruary 3, 2009 at 11:21 am
Hi Suzanne, Just a short note and maybe some discouraging info. My doctor told me recently after I was experiencing severe neck pain, shoulder pain and it traveling up my neck to the top of my head (the meneges nerve) that unfortunately the older we get the worse the symptoms become and the longer they last. Mine lasted for three months this time. I found out that I had a urinary infection and the doctor gave me Levaquin for 7 days. After 2 days my pain went away. When the nurse came in with the results of my urine test, my doctor and I both said at the same time, “that’s the problem”. I am glad that he is very informed about the side effects of GBS and know that any infection in your body can result in some of the original complaints I had when I first became diagnosed with GBS. One was a bladder infection I didn’t know I had as this time I didn’t know I had one, but once it started to stop my neck pains and other symptoms I had for 3 months went away. MY original onset of GBS started with the pains in my neck shoulder and head and now everytime I get an infection that’s where the pain starts. Listen to your body and realize that the symptoms we have from GBS now called CIDP are real. Why are we so surprised all the time? I was diagnosed with GBS in January 2000 and my residuals get worse and worse, although sometimes I have good days, but over doing it or getting stressed will surely quicken the residuals which come in many forms. By the way to anyone else out there reading this reply, do you experience weak bladder and especially frequent urination and as much diffuculty sleeping as I do. Thanks – Bunny
AnonymousFebruary 17, 2009 at 6:15 pm
I have residuals and they are worse now than they have ever been. It has been longer for me,GBS, than most on here. The Dr. said it seems like something new all the time with you. Duh…YEAH !!! There is nothing they can do but run a bunch more tests on you to make you think they are doing something for you. Well, they are…wearing you out with all the running around taking their tests !!! For me, I might as well keep my mouth shut, for all the good it does to mention residuals to any of them.
Will keep you in my prayers.
AnonymousFebruary 18, 2009 at 12:19 am
Hi! I had GBS almost 26 years ago. Originally the residuals had lasted for about 4-5 years and then they disappeared. About 5 years ago I began to have residuals again and they hit with a vengenance. I don’t think there is any fixed or fast “rule” around residuals. I think after the onslaught our nerves have suffered, it only makes sense that there would be lasting effects from the illness.
Hope this helps!
AnonymousFebruary 20, 2009 at 6:04 pm
Hi, I am currently having more problems with my legs than what I had a few months ago.My specialist told me that “what you have is all you will have.It won’t get any worse and it won’t get any better” I am seriously skeptical about that particular statement.It’s not psychosomatic,it’s very very real.
GBS-Feb 16 2007
area affected:head to toes
AnonymousFebruary 21, 2009 at 10:33 pm
Hi Grimm: I was told the same thing-I would neither get better nor worse. For the last three years that has been generally true. In the last few months though I seem to be weaker in terms of leg strength and fatigue. Also I find my pain is worse than it used to be. But we are all different. One thing for sure it is not psychosomatic and noone here would think it was. I answered your other post about methadone by the way. Jeff
February 22, 2009 at 1:27 am
Mine flare up sometimes bad. I am a few months shy of 3 years now. I went to the zoo…a small one…had a blast the other day and yesterday felt so awful I thought i was relapsing. My legs hurt so bad, it was hard to walk, balance is off still, tired tired tired, arms ache (not sure about this one. could be carrying and using my camera so much), tingling from my toes to my hips, pain in my back. I spent the day resting and today was a tiny bit better. Meaning it wasnt worse, but did hurt enough to think about calling the neuro. Alerted hubby to what was going on yesterday morning and he reminded me about all the walking I had done. I felt like a big sissy and seriously out of shape for something like a few hours at a zoo to zap me that way. But, I have also been under a major amount of stress lately so that of course doesnt help. Anyhow, I do go thru episodes where I am seriously miserable and have no clue what triggered it. If this particular one gets any worse, I will def head in. It scares the holy heck out of me! On the good side, everyone in the house and in town has had that cold/flu bug and I havent gotten it! *knock on wood* If i get that, I will be in fear mode.
I sure hope you feel better. It is scary esp when you have felt good for a stretch of time. Get plenty of rest, try not to be afraid, and drink plenty of fluids oh and did i say rest 🙂 Keep an eye on things and if worried it is worse, get in to see the dr asap.
AnonymousFebruary 22, 2009 at 11:34 am
I had a bad flare up yesterday after being on my feet and on the go since Monday with funeral arrangements and going to the funeral of my husbands sister.
My symptons were exactly like fairly odd mothers. I spent yesterday on the sofa and could not function at all. Today it is a lot better and I am able to
AnonymousMarch 6, 2009 at 1:39 pm
Bunnyrarebit I find that I have to go to the bathroom at least once if not more during the night and sleep is a precious commodity, I often wake up between 2-4 a.m. and will be awake for an hour or more. I’m convinced it’s the pain waking me up. So I do relate to you but never considered the trips to the bathroom as a residual. I can see why you would be suspicious given the infection you had.
Also Fairly Odd Mother I’m coming up on 3 years too, my symptoms started in April and I was hospitalized in May 2006.
Residuals are weird. Yes some things are much better, hey I can tolerate wearing closed toe shoes and sleep with my feet under the covers and I don’t have to take nurontin for the pain anymore but I have fatigue and can’t push past it. I have not been able to get close to my pre-GBS physical condition and that torments me at times. The pain is weird and it moves around in my body. I almost always have a buzzing feeling in my feet and recently the twitching has returned to my face, too much stress lately.
Another comment I think Fairly Odd Mother made about getting scared if you get sick. I relate. I still am so nervous when I get sick. And flying too. I flew and got a sinus infection prior to getting GBS so each time I fly I’m reminded. It has gotten a bit easier but I’m always mindful of it. I guess because I always have reminders of GBS, pain, fatigue, twitching, etc.
AnonymousMarch 7, 2009 at 7:33 pm
I am a surivor of GBS had one flare up a few months ago with the flu and in another flare up right now following a respitory infection/cold. I have gone more numb from my chin down to my feet. This sucks everytime i get sick it seems there is a flare up. Last one required hospitalization. I havnt really told my mom the extent of my numbness. I am not sure she would believe me anyway. This makes it hard to go to the doctor. I live with my parents and they control my finances. I think they are sick of me being sick I know I am.
AnonymousMarch 9, 2009 at 3:32 am
“Always” is a big word. It really does depend on the individual. A lot of my residuals decreased but several others continued to “strongly” make their presence known and some are beginning to increase. We made a major move 4 1/2 yrs. ago and I’m not near as strong now. I don’t demand so much of myself now, either. Perhaps I am more accepting of my now life ???? To me, 14 yrs. is a long time for a chronic disease. . . And I must admit that I don’t care for myself with the same commitment of several years ago.
My husband has been unemployed since last Sept. ~ difficult ~ yup!! But, thankfully unemployment is paying for him to return to school after all these years, as a displaced worker. So, financially, more struggle for 2+ years. But, at least there is a light down the tunnel now! Not being able to work to help our situation is hard on my head and it transfers to the body’s weakest points. It’s call stress 😮 and it’s never good for these diseases . . .
AnonymousMarch 20, 2009 at 12:04 am
Could you please elaborate on the “meneges nerve” ?
I have never heard it mentioned before on this site. I have had these headaches from day one accompanied with this GBS. Drs. seem to think it is nothing when you tell them about the shoulder, and the pain going up your neck into your head and causeing these terrific headaches. They seem to think if you are unable to walk then that is all we need to be concerned about…wrong. It just seems to me that none of the Drs. want to hear anything about your case after you have been going to them for a little while. Maybe, it is just me thinking that way, but I really feel like no one wants to hear about GBS. Thank you all so much for the help and encouragment I recieve from this forum.
AnonymousMarch 20, 2009 at 1:35 am
[QUOTE]”The first list doesn’t really concern me because I’ve just decided that these are all things I’m going to live with for the rest of my life, so I’ll just have to accept them. “[/QUOTE]
During my first two years of recovery I experienced a lot of what you have described, but a lot of the symptoms in my case abated- I have diminished lung capacity, but it is much better now than during the first three years of my recovery. Also, I have fewer tremors and the pins and needles occur less frequently now, a lot of the pain subsided for me during year three of recovery. Your cranial and parasympathetic nerves are still healing, and with time and patience you may improve much! (Those B’s are a bear) My real issue is with fatigue and depression, but please try not to concern yourself with the residual aspects from the perspective of living with them as you feel them now because your body is still healing!
I think the varying of intensity of the symptoms you describe are quite normal for a GBSer who got hit hard and are now two years into recovery. Your themes are quite common on this forum- if you use the search engine to research this you will see most continue to show improvement from three to five years after onset, with the occasional set backs ( I have read about few relapses)- some show recovery even longer. I have read from a few recovering folk that some symptoms had gotten worse prior to a spree of healing, as if it were some kind of prelude. My point is that do not assume what you are experiencing will forever remain a part of your ill-health because it may not be the case. So, be patient and think positive! This is not to say your symptoms will diminish over time- it is a roll of the dice so it seems. Hope for the best and prepare as much as you can in event things don’t get better, but you are still a NooB, as they young-uns say!
I guess as a 12 year vet I have read so many threads here and elsewhere I now think of long term residuals as damage that remains after the body stops healing itself, that the first five years are a time to focus upon therapies to give your body the best of chances for a full recovery IE lots of B-12, rest, physical and speech therapy, etc. Look for the slight improvements because I’d bet they are there, masked in the midst of your sense of setback! You know, on a related note my lower left lip remains out for the count, but it tingles when I overdo it or get sick- I use this sign as an indicator that I am overdoing it, to change my behavior to try and compensate for the added physical duress. My quivering lip has been a telltale sign for me during the past ten years or so.
In conclusion, give yourself the benefit of the doubt for a few more years, then concern yourself with acceptance of what issues remain. I hope you are in psychological therapy, as well, because a good knowing therapist might help you differentiate between your current state and the natural projection of potential outcomes into the unknown future- I got into therapy a bit late and wish I received treatment to this effect during the traumatic times of drastic change in lifestyle.
/some real insightful posts above- a great group of GBSers!
AnonymousMarch 24, 2009 at 3:48 pm
I think age has a big part to play in our recovery too. Some young whipper snappers can climb several mountains before an old codger like me can get started. Just do all you can everyday, and enjoy the moment; while you are still young and can do so. Well Glory ! Take a vacation ! 🙂 Be thankful, and I know you are, we made it thru another winter and springtime is here !
April 28, 2009 at 11:16 am
I have had GBS three times. The last being 2002. I still ache all the time and get tired easily. I just recently was taken to a Christian rock concert where I had to walk down a lot of steps to our seats and then walk back up. I was hanging on the railing with every step. Two days later my legs are still weak and achy. I just turned 69 so age has something to do with it too. I am okay walking but going up and down steps is a hard thing. I need to hold onto a railing or I lose my balance.
AnonymousJanuary 21, 2010 at 4:28 am
Just back from appt with my neurologist and he said my hand tremors ,difficulty with swallowing ,the mild vibrations i get inside my body ,ringing in my ears are not related to gbs.Previous appt he said my hand tremors were due to parkinsons so my gp sent me for a second opinion and he said no its not parkinsons.And ive had vertigo on and off for several months . Never had any of these symptons before gbs ,my gut feeling tells me it is from gbs . He dosnt know if my ankle reflexes will ever come back and said its nothing to worry about.Can anyone tell if all their reflexes return? 🙂
AnonymousJanuary 23, 2010 at 1:45 am
I am currently suffering from migranes. It is unknown of the cause; GBS, medication or stress. I have also suffered from chest infections and have taken medication to clear it up as a result of a cold. as for fatigue, it comes on quickly. And I can just curl up on the floor and have a sleep. medical appointments take a lot out of me.
Please take care all.
AnonymousJanuary 23, 2010 at 7:37 pm
Hi Zanna: People are different with reflexes too-some get them all back and some don’t. My ankle reflexes have never come back after five years and I was told these are the reflexes we are least likely to get back. It doesn’t seem to make too much of a difference to me.
Lately my residuals are getting worse. The pain in my thighs if I sit or walk for more than a few minutes can be unbearable even with pain killers so I have to lie down a great deal. Lately I have noticed that the pain is worse than it used to be and comes sooner. I am concerned that at some point standing and walking will not be possible at all because of the pain, but I am trying to take it one day at a time. Jeff
AnonymousJanuary 29, 2010 at 4:08 am
I experienced MFS two years ago and am currently experiencing residuals for about 2months now after almost 6 months of feeling ‘normal’. It started after a strenuous day in the garden and a flu and after a few days I started getting the weird sensations and weak knees. I went to the Neuro for a checkup (3rd or 4th time I’ve done this since the onset of MFS). He usually does a nerve conductivity test and then sends me home with anti-depressants. This time I insisted on a thorough checkup, and ended up staying in hospital for full MRI’s, blood tests, EEG’s etc.
After all that, nothing was found, all ‘normal’ and I’ve been back into the normal routine.
What I’ve noticed is that the more I notice these things, the more stressed I get and that results in more residuals! So, I’ve been working on breaking the cycle mentally by thinking happy thoughts. 🙂
Its worked to an extent I must admit, but the stresses of life in general and infections ( just recovered from a tummy bug ), are making it real difficult.
At the moment, I have pins and needles / tingling in my left hand, after very long and its really stressing me out. I usually try and find this thread to remind myself that what I’m experiencing is only the ‘new normal’ that I need to get used to.
Keep positive, I know its hard, but its the key to breaking the cycle!
AnonymousJanuary 31, 2010 at 3:49 am
[B]Drummer:[/B] You asked earlier in a post what the “meneges nerve” was – I think Bunny actually meant the [B][COLOR=”blue”]”meninges”.[/COLOR][/B] The reason I have heard of the meninges is because I have a disease called Chronic Adhesive Arachnoiditis (one of the meninges layers). I got the disease from a myelogram prior to back surgery in 1974. It was caused from the contrast dye used in the myelogray, called “Pantopaque”. The meninges are 3 special layers of tissue that surround and protect the spinal column and brain; the Dura, the Arachnoid, and the Pia (in order from scalp to brain). Their involvement with the brain is as follows (and I did not have this memorized):)
[B][COLOR=”blue”]Veins of Brain[/COLOR][/B]
The veins of the brain pierce the arachnoid and dura and open into the venous sinuses of the dura.
The superior cerebral veins drain into the superior sagittal sinus. The superficial middle cerebral vein follows the lateral fissure, sends superior and inferior anastomotic veins to the superior sagittal and transverse sinuses, respectively, and ends in the cavernous sinus. The inferior cerebral veins drain the inferior aspect of the hemispheres and join nearby sinuses.
The basal vein is formed by the union of several veins, including those that accompany the anterior and middle cerebral arteries. It winds around the cerebral peduncle and ends in the great cerebral vein.
The single great cerebral vein is formed by the union of two internal cerebral veins. It receives, directly or indirectly, a number of vessels from the interior of the cerebral hemispheres and also the basal veins. It ends in the straight sinus.
[B][COLOR=”Blue”]Venous Sinuses of Dura[/COLOR][/B]
The blood from the brain drains into sinuses that are situated within the dura mater and that empty ultimately into the internal jugular veins.
The superior sagittal sinus lies in the convex border of the falx cerebri. From its commencement near the crista galli, the sinus runs posteriorward and, near the internal occipital protuberance, enters in a variable manner one or both transverse sinuses. It receives the superior cerebral veins and communicates with lateral lacunae that contain arachnoid granulations.
The confluence of the sinuses (or torcular) is the junction of the superior sagittal, straight, and right and left transverse sinuses. It is situated near the internal occipital protuberance. The pattern of the constituent sinuses varies, and dominance of one side in drainage (e.g., the right) is usual.
The inferior sagittal sinus lies in the concave, free border of the falx cerebri and ends in the straight sinus, which also receives the great cerebral vein. The straight sinus runs posteriorward between the falx and tentorium, and joins the confluence.
The transverse sinuses begin in the confluence, and each curves laterally in the convex border of the tentorium, where it attaches to the skull. At the petrous part of the temporal bone, the transverse becomes the sigmoid sinus, which grooves the mastoid part of the temporal bone and traverses the jugular foramen to become the internal jugular vein. Smaller channels (petrosal sinuses) connect the cavernous sinus with the transverse sinus and jugular vein.
The cavernous sinus comprises one or more venous channels (sometimes a plexus). * It is located in a dural compartment bounded by the body of the sphenoid bone and the anterior portion of the tentorium. In addition to the venous channels, the dural compartment contains (outside the endothelium) the internal carotid artery, sympathetic plexus, abducent nerve, and, further laterally, the oculomotor, trochlear, and ophthalmic nerves. The cavernous sinus extends posterorly from the superior orbital fissure to the apex of the petrous part of the temporal bone. It receives several veins (superior ophthalmic, superficial middle cerebral, and sphenoparietal sinus) and communicates (by the petrosal sinuses) with the transverse sinus and internal jugular vein, as well as with the opposite cavernous sinus. The facial vein (via the superior ophthalmic vein) communicates with the cavernous sinus and hence allows infection around the nose and upper lip (“danger area”) to spread to intracranial structures.
Lateral lacunae are venous meshworks within the dura near the superior sagittal sinus, and both the lacunae and sinus occupy the granular pits of the calvaria. The lacunae receive (1) emissary veins, (2) diploic veins, (3) meningeal veins, and (4) occasionally some cerebral veins. It should be noted that the emissary veins, which pass through foramina in the skull, connect the deeper vessels with the veins of the scalp and hence also allow infection to spread from the scalp to intracranial structures.
And, by the way, meningitis is actually inflammation of [B][COLOR=”blue”]”the meninges”.[/COLOR][/B]
[B]Bunnyrarebit:[/B] My GBS also started with severe pain in my neck and shoulders…1st the left side, next day it spread to the right side too. Three days later in the evening after going to the doctor 2 days and the ER once, I still had the neck and sholder pain, and now could not urinate. When I tried go get up from the toilet my legs collapsed. My wife called the ambulance and I was admitted to the hospital but it took forever for them to insert a catheter, and when they did about 2 quarts passed. But I did not have any urinary infection and the pain continued in my neck and shoulders. In fact, because of my back history, they misdiagnosed me. They thought I had something wrong with my cervical spine. And because of that, I did not get any treatment of IVIg or plasmapheresis. But once I was relieved I had no problem urinating again. 3 days later I couldn’t breath, but the two neurologist treating me still thought it was my c-spine? Then I got Transverse Myelitis (unknown at the time), and the TM did severe damage to my sphincter muscles. I have control of my bladder and bowles, but I have dysfunctions in both.
[QUOTE]Just back from appt with my neurologist and he said my hand tremors ,difficulty with swallowing ,the mild vibrations i get inside my body ,ringing in my ears are not related to gbs.[/QUOTE] It has been 13 years (Dec) since my onset of GBS…then to CIDP. I got my GBS from a flu shot, and as stated above, I did not get any treatment…was totally paralyzed. The only thing worked on my body was my eyelids, and that’s it! NOTHING…and that’s one hell of a feeling, with a tracheotomy and hooked to a respirator. But I should feel blessed that my eyelids worked, because that was how I communicated. For the past 13 years my ears have been ringing…24/7, the left worse than the right. It sounds like a warm summer night when the locust are in season…like when I was a kid on the farm and I could hear them in the fields and woods about 150 yards away. I never had a problem with my ears before GBS. I walk with a cane because I have never regained all my balance – maybe 70-75%. I never had a balance problem before GBS, and I doubt that you have Vertigo…just your balance from GBS too. I also have tingling in my hands/feet, numbness in parts of my legs, butt, and back. I have severe axonal damage, and anyone that has gone through axonal damage have many dead nerve cells, whose function is to communicate with other nerve cells. Without the help of the nerve cells, the neurotransmitters can not release the chemicals to support the muscle function, and without the help of this support the muscle must support itself. And as we get older the muscles get weaker because they do not have any reserve energy they may of had at one time, so the fatigue will become more noticable. That’a why fatigue will always be the no. 1 enemy of GBS/CIDPers. My hands/fingers also trimble a bit, and when this started about 4 years ago my neurologist thought I had MS or another attack of Transverse Myelitis (actually, that’s what MS is…multiple attacks), but a lumbar puncture did not show any Oligodendrocytes cells, but still showed an elevated protein count. I get regular treatments of IVIg. My last visit he noticed my chin quivering, and asked how long that had been going on?? My wife spoke up and said “about 2 months.” Now he thinks I may be in the early stage of Parkinson’s Disease.
The truth is, “we are in our own world – All of us with similar, but not exactly alike.” We share each others adventures because down deep inside, we are the only ones that truly understand how horribly one can feel with all the residuals, and what may trigger one of them, or several of them. I think we all know stress is not good for us, and as hard as it is at times, we need to keep our spirits high with a positive attitude. One thing I have learned over these last 13 years is that a strong spiritual and family love will restore, and uplift life more than anything else on this Earth.
Warmest regards to all.
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