Newbie with questions
AnonymousMay 25, 2011 at 5:13 pm
Hello everyone. I have polyneuropathy — I’m not sure what the cause is, but from what I’ve read, a form of CIDP seems possible. I became ill immediately after I had a strep infection. My initial symptoms were shooting hot and cold stabbing needle like pains in the ends of my toes. Tingling and numbness in my toes and feet. And then it progressed to involve my fingers, hands, arms and legs. I’m constantly in pain. I also have episodes when I have difficulty breathing. It’s like the nerves or muscles in my body “forget” to assist with breathing. I had an abnormal QSART (autonomic test) in 2003, so my BP, HR, digestion, salivary glands, bladder, bowels, etc. are also involved.
I don’t have deep tendon reflexes in my knees. They hit my knees with their rubber mallet and nothing happens. I’m fatigued/exhausted all of the time. I used to be numb, tingly and cold much of the time, but whatever this is has progressed to having no sensation. I’m pretty much confined to my home because the more I try to do, the more symptoms I have.
I had electrodiagnostic tests in 2003 and it was suggestive of a peripheral neuropathy, but nothing was done. I had testing again in 2007 and the conclusion was I have an asymetric peripheral polyneuropathy. Features appear for a mixed neuropathy of both axonal and demyelinative type. On the nerve conduction test I have absent right and slow left sural sensory nerve conduction velocities, reduced peroneal CMAPs and reduced left peroneal distal motor conduction velocity.
Could this possibly be a form of CIDP?
I’ve been sick for a very long time and I’m very scared. On Friday I’m going to try to drive myself back to the neurologist who did the electrodiagnostic testing in 2007. She’s two hours away.
Thanks in advance for listening to me.
AnonymousMay 25, 2011 at 9:04 pm
There are a number of different permutations of CIDP; you certainly could have one of them. My advice would be to get to a neurologist who specializes in peripheral neuropathy. Even better, get to a neurologist who specializes in CIDP, if possible. It is important to get a correct diagnosis and implement a treatment regimen as early as possible in an effort to stave off nerve damage which may be irreversible. Best of luck and let us know how you are doing.
AnonymousMay 25, 2011 at 10:46 pm
Hey Goodney, thanks so much for the encouraging reply. I’ll keep searching until I find the right neuro. As a side note, why is plain old PN so hard to believe/detect? I’ve been ill for a long, long time, but it took forever just to get an EMG. What’s wrong with neurologists these days? Am I the only one who runs into one pompous neuro after another? I can’t count how many times I’ve been told my symptoms are in my head without them even ordering an EMG or addressing my respiratory problems. . . . I can stick pins up and down my arms and legs without feeling a thing (not recommending this). Hoping there’s still hope for me.
Thanks again for the communication!
May 26, 2011 at 9:55 am
Many of us with CIDP searched long and hard until we found a doctor that was willing to keep looking for the correct answer. After 12 I found one that knew what she was doing and got me on IVIg within days. Two and half years and I am stable. I live in a smaller town and she has 12 patient so find one who at least knows what initials mean. Keep looking and don’t give up.
AnonymousMay 27, 2011 at 2:55 am
[COLOR=black]It depends on what you mean by near: would you consider Minneapolis, Chicago, or St. Louis too far? Those cities have excellent neurologists well versed in peripheral neuropathy (U of Minn, Northwester, and Washington University, respectively). You might also consider the Mayo Clinic. If nothing else, you could go there to get a diagnosis and a treatment plan and have a local neurologist coordinate the care in consultation with the diagnosing doctor.[/COLOR]
[COLOR=black]Your PN could be CIDP, but it seems it would be an atypical variant. Still, to get to a diagnosis, I would try to find a neurologist who has a significant practice in neuromuscular disease. [/COLOR]
[COLOR=black]I understand your frustration about the lack of knowledge on CIDP, but I don’t think it is from lack of interest. True, doctors don’t get much training on it, but that is because there are so many other, much more common, conditions to study. In the long run, it is more about numbers and opportunity. There are at least 10 times as many people with MS as CIDP, and even those patients form a small proportion of most neurologists’ practices. If a doctor doesn’t see but one case of CIDP in her/his career, how likely would s/he be knowledgeable? Nevertheless, do all you can to educate all the medical professionals you meet. In my case, I gave my primary care physician and my ophthalmologist a copy of a review article my neurologist gave me and quizzed them on it the next appointment. It was clear that they read and understood it.[/COLOR]
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AnonymousMay 27, 2011 at 9:37 am
Hi Mark. Mayo in Rochester did an EMG and the test results were suggestive of PN. I also didn’t pass their brief QSART screen for autonomic neuropathy. Unfortunately, they offered me nothing beyond that. My stay there was heartbreaking, but that’s another story.
Minneapolis and Chicago are close — within 3.5 to 4 hours away. Can you offer names of physicians at both facilities?
Also, can you tell me why you think if I have CIDP it would be an atypical variant? Knowledge is power.
Thanks for the information, I really appreciate it.
AnonymousMay 27, 2011 at 7:49 pm
[COLOR=black]Why an atypical variant? Largely because your EMG results say asymmetric. CIDP most often presents symmetrically.[/COLOR]
[COLOR=black]I am sorry you had a bad experience at Mayo Clinic. It is generally considered one of the best places for diagnosis and treatment of CIDP. The disease was even named there. I would be surprised that they would have missed a case of CIDP, but I am often surprised. At Minnesota, I would suggest Dr. Gareth Parry. At Northwestern, Dr. Burt (not a neurologist) runs a clinical trial on treating CIDP. He must have a neurologist he works with, likely Dr. Sufit. University of Chicago has their Center for Peripheral Neuropathy.[/COLOR]
[COLOR=black]Godspeed in finding the relief you need,[/COLOR]
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AnonymousMay 27, 2011 at 11:40 pm
Thank you very much, MarkEns. My EMG results do say asymmetric.
I forgot to mention that I also have an “old” nerve root injury in my c-spine, but I don’t recall exactly where it is. I’ve always wondered how testing could determine if the “injury” is old, active or something else.
Overall, my experience at Mayo was fairly pleasant but lengthy. The physicians were mainly in search of autoimmune disease, so sending me to neurology was a last ditch effort. The neurologist I saw was a bit of a bully. He ordered an EMG + autonomic screen and wrote me off as having somatization disorder prior to receiving the results. My internist and the autonomic lab pushed him pretty hard to do full testing, but the neuro overruled them and said no. He sent me on to neuropsychiatry, I was given the TOMM test (test of medical or malingering) and a somatization disorder test. I passed both with flying colors, and was sent home without a diagnosis. Actually, my diagnosis was depression due to unresolved health issues.
Thank you for name dropping, I really appreciate it. 🙂
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newbie with questions….
AnonymousJune 5, 2008 at 5:58 pm
I am a newbie to this forum, I stumbled on it a few weeks ago and I am glad i did, It has been very informative. I was diagnosed with gbs in april of 2006 and had ivig treatments in intensive care for 6 days. I feel very fortunate because after reading some of these posts i have determined that I did not have a severe case…some questions I have are as follows.
1. I still have intermittent tingling/numbness in feet. Is that common?
2. I have problems with my fingers being able to do simple tasks..ie, open Ziploc bags, hold onto something tightly, etc
3. any known effects of ivig. I have already been told i cannot recieve flu shots
4. ever since gbs my blood pressure has been high, high enough that i need meds to keep it down. I never had blood pressures issues before gbs, has anyone else experienced that?
5. Is gbs heridetary(sp)..Is my daughter at risk since I got it?
6. Is there a chance for it to reoccur?
Thanks for any answers/advice. I have found this sight to be very helpful and am glad i discovered it. Thanks again
AnonymousJune 5, 2008 at 7:07 pm
Welcome to the forum. I had GBS 25 years ago and I still have tingling and numbness in my fingers and hands, so yes it is normal…annoying some days, but “normal for me!” I also get the sensation of electic shocks going off all over.
GBS is an auto immune disorder often preceded by a virus or food poisoning. The body, in essence, turns on itself and destroys the myelin sheath on the nerves. We are all told we should not get a flu shot as they do not know what virus lead us to get GBS in the first place, so I personally will never get one. I have no way of knowing if any of the viruses they inject into us would cause me to have a reaction and get GBS again. It is rare for people to get it twice but it does happen. Because it is an auto immune reaction, it is not hereditary so you can stop worrying about your daughter.
High blood pressure has not been an issue for me but I have read here on the forum that others have experienced problems, and they can correct me if I ma wrong, but I do believe it is somehow tied to IVIG, something they did not have for us 25 years ago. There are a couple ladies who are here on the forum who are very well versed in IVIG,, how it should be administered and all the side effects. You may want to do a search or I am sure they will see your post and add in here things I know I am unable to speak to.
Keep well and continue to rest. It helps alleviate some of the tingling and numbness. I find mine is worse when I am tired.
June 5, 2008 at 11:07 pm
I, too, had a mild case of GBS DXed 1/9/08. I am really fortunate that while I was out of town, my primary care doc essentially diagnosed over the phone (he had had a GBS patient before). My responses to your questions below are in [COLOR=”Blue”]blue[/COLOR].
1. I still have intermittent tingling/numbness in feet. [COLOR=”Blue”]I am still tingling/numb every day. I understand from lots of good people on this list that this can last up to at least two years, and some tingling may never completely go away.[/COLOR]
2. I have problems with my fingers being able to do simple tasks..ie, open Ziploc bags, hold onto something tightly, etc. Yup – join the club:) [COLOR=”Blue”]I am now able to (most days) button my own shirt cuffs. Very fine manipulations still defy me.[/COLOR]
3. any known effects of ivig. I have already been told i cannot recieve flu shots. I had [COLOR=”Blue”]horrible headaches afterwards for a week. But that may also have been a result of the spinal tap. My doc is 50/50 on the flu shots. He says no for at least three or four years, but then, is the risk of getting the flu and a possible reinfection worth the risk of a flu shot? I am also a teacher and see lots of students every day. I remain uncertain about the flu shot question.[/COLOR]
4. ever since gbs my blood pressure has been high, high enough that i need meds to keep it down. I never had blood pressures issues before gbs, has anyone else experienced that? [COLOR=”Blue”]I was borderline hypertensive before my GBS. Then, it got really high while I was in the hospital. Now that I am working out again, it appears to be a bit low (average 105/50). I see my doc on Monday and we will discuss this.[/COLOR]
5. Is gbs heridetary(sp)..Is my daughter at risk since I got it?[COLOR=”Blue”] From all I have read here and elsewhere, no. However, my daughter’s pediatrician did make a note of my GBS on my daughter’s chart during her last exam.[/COLOR]
6. Is there a chance for it to reoccur? [COLOR=”Blue”]From what I have read, if you do not have CIDP, there is a 3% chance of a recurrence.[/COLOR]
I have found the people on this list to be a remarkable source of help, inspiration and information!
AnonymousJune 5, 2008 at 11:25 pm
My aunt and i are both nurses, so we have received flu shots for years. She has seen 2 coworkers this year who have come down with GBS shortly after receiving their flu shots (strongly suggested for all health care workers). Their cases were linked to the flu vaccine by a very prominant and well-respected research hospital. I have also stumbled upon websites of lawyers who claim theyve won cases of Flu vaccine-related GBS. I dont think i’ll ever have a flu vaccine again, even though my information is “grapevine”.
AnonymousJune 6, 2008 at 10:45 am
Hi David, Welcome to The Family. Just my take on your questions-No Your daughter is at no higher risk than anybody else in the world, of coming down with gbs. Numbness and tingling-normal to have it as a residual-I still have it since my first paralysis in Aug 05. Effects of ivig, has nothing to do with vaccines of any sort, are possible menigitis (I had it on my second day of infusion) or headaches, flu like symptoms, hives etc- to help prevent sideeffects some people premedicate with Tylenol and Benadryl. As for vaccines in the future, if you read the important notices that comes with the vaccines, you will see a sentence that states-If you have/had gbs in the past, do not receive this vaccine—it is not recommended for anyone with a history of gbs/cidp. As for coming down with gbs more than once-it is possible, others on here have had it multiple times, as well as myself-5 hospital stays for paralysis. I am now dx with cidp, and am currently in another flare up. I find it hard to do somethings with my fingers, especially during my flare ups-I leave my button down shirts buttoned and just take them off over my head-alot faster and easier. My bp goes up and down, currently its up, but during my paralysis events it drops to below 100/70 usually 80/50-which is extremely low for me. Since it is controlled by parts of the body that you have no control over, it can get messed up also. Keep a positive attitude and your recovery will follow, sometimes it takes alittle longer than you want it to, but it will come. Since you have one autoimmune disorder, don’t be surprised if you come down with more. Take Care.
AnonymousJune 6, 2008 at 2:30 pm
THANKS Janet, Tom, Jamie and Cheryl for the very valuable input. I am glad I found this website and forum and look forward to any input from anyone going thru this, Its hard to talk to people who have not gone thru the ordeal that we all have. I hope over time to be as helpful to others going thru this and if anyone reading this just wants to talk I offer an open ear. Thanks again and i look forward to more answers, asking more questions, and helping anyone I can
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newbie with questions
AnonymousSeptember 25, 2007 at 9:53 am
I am new to this forum and have a number of “burning” questions that I have not yet seen addressed in the two weeks I have been reading here. I appreciate greatly all the information I have learned from reading the posts on the forum about real life with GBS, but have some concerns in my experience with GBS that I would greatly appreciate having advice given. Briefly, I was diagnosed in early March 2007 so am still pretty new in this. I started having tingling and increasing trouble walking that worsened over a week before hospitalization. I did not have to be on a ventilator and never lost ability to walk. My understanding is that this process is atypical GBS because, although multiple nerves have somewhat slowed conduction, it is in an axonal pattern, I kept my reflexes, the pattern affects the left side more than the right (and classically “should” be the same), and the two spinal taps were normal in protein. IV IgG helped the first time (2 g/kg) in Mid April and not the smaller dose in mid-May so we went to a watch and wait mode. My strength when they test it is not too bad, but I walk badly and have very limited endurance (I can walk only about 80-100 steps without stopping to rest and only about 1000-1500 steps a day without getting worse). Finally, I am having blurred vision the last 2 months. I understand from the posts that fatigue can be significant and persistent and that rest is very important. I understand the time course for expected recovery is also very slow (Getting Better Slowly). I also understand that it is a lot more common than appreciated for the eyes to be blurred. The two questions that most make me feel like I am going to burst are these.
1. Regarding fatigue. I did not have that much terrible fatigue early in this, but now I feel many days like I have been run over by a truck. I am a hard-core workaholic and I realize that I am sometimes walking too much, but I do not understand why the fatigue is worse now nor why if I overdo it, it sometimes takes WEEKS to recover. Because of my job, I periodically have needed to walk more for several days in a row, and still will have worse pain and trouble walking over three weeks after this, not back to baseline. The pain in mainly in the feet and also a generalized muscle achiness especially in the muscles of walking. When I was young, I would sometimes climb mountains and have fatigue for 2-3 days after overdoing, but weeks to recover is really a long time. Is this typical? It seems to me that the people around me have the greatest problem with me saying I am tired (mainly because I am physically doing SO MUCH less than I used to do). People keep saying “you can still walk,” and sometimes talking about that maybe the fatigue is mental. Fatigue in GBS seems to be really misunderstood! There was a time I slept a lot, but now there is no brain fatigue, I just tucker out as the day goes on and get slower and slower to move and more and more achey. I feel like I am moving on determination and sheer stubbornness to not let this stop life. I think I am in a pretty positive place considering all the changes in my life. I am still working full-time in a job I love although I very recently needed to change what I did there so that there will be less walking. I try really hard to maintain muscle strength and to keep going, but worry that the muscles are getting weaker despite this and that it is getting harder to walk/exercise.
2. The effect on eyesight really bothers me. Sometimes it is hard to read and I have a reduced area in which I can read; the rest is really blurred. The ophthalmologist did not find any reason for this and I can still read (Thank God), it is just that I have to struggle to do so because of the blurriness. I have found a way to compensate a lot for the physical demands of life by using a scooter for mobility and AFOs/cane for the foot drop on both sides (especially left) when walking, but it is hard to compensate for the fact that my vision gets blurred after reading for a while, especially on the computer. My questions on vision are has anyone had experience with IV IgG helping this, it there anything people have done to help with this other than break up reading tasks, will it go away??? and, should I be more worried about this than the walking problems (I am, because I feel that I could make it through life without walking much if that is what is required of me, but I cannot conceive of not being able to read and see (I teach and do research at an university). This problem with vision scares the daylights out of me.
I do not in any way wish to sound like a complainer or a scaredy cat. I am trying to take what life has given to me and make it into positives. I also apologize if this post is too long or I ask too many questions at once. It helps so much to hear and know that people are supporting each other and willing to share their stories to make this less scarey and help people to feel less alone in it. God bless you all for your wisdom and kindness to each other.
With hope for a cure for this disease.
AnonymousSeptember 25, 2007 at 12:25 pm
Did you have an MRI to see if your optical nerves were affected?
My 6 year old has CIDP and when she was originally dx’d in Dec 2005 her optical nerves were affected. She had blurred vision & her right eye was paralyzed.
I’m not extremely familiar with axonal GBS but I do know that once that axon’s are affected it takes MUCH longer to recover than from “regular” GBS.
Have you had any further testing to rule out other conditions as well? Or did you just get the GBS dx & that was it?
Once the GBS attack has been halted that means that the antibodies have let up on your nerves & you can begin to repair. If you are having new symptoms I would guess that the attack has not been halted. I would talk to your neurologist about doing an MRI of the brain & spine, and a repeat EMG (to compare with the last one), at the very least.
AnonymousSeptember 25, 2007 at 2:09 pm
First off, I am sure not only I, but others will chime in here and say that you are DEFINITELY NOT a ‘scaredy cat’! The things that are happening to you and your body are truly frightening issues…no two ways about it! OK?
I’ll try to address your issues on the basis of my own experience and maybe it will help you understand some things?
Reflexes: I had what is called a ‘sub-acute’ version of the ‘chronic’ CIDP onset. Meaning that after the antagonist [pneumonia] went away [sort of] about 6 weeks after the pneu. all-clear I started getting NUMB in my toes and fingers. Numbness kept creeping up the foot and fingers to the point 5 weeks after that I’d called my GP who told me to go to the ER. While waiting in the ER my numbness in the hands proceeded to mid-way to the elbow, and the foot issue was just below the knees [took 12 hours for it to spread so fast] I had been a fairly active person before the pneu., slowing down afterwards but still moving about quite a bit.
AFTERWARDS for about 6-9 months, I still had reflexes…I believe residual, now I have little or any at all 4+ years into it [even w/PT exercises] It often takes a while for the damages to be done and ultimately show in testings. I had four Nerve conduction tests in my first year and none after that. The basic ‘boink’ at the reflex points show that nothings happening. It is not something to be discouraged about tho. BTW My breathing thru out it all never seemed to be affected [tho allergies, pneu. history and other issues should have made it so]. I do not personally think that it’s soo unusual per-se, just lucky for you on your part! One good thing?
Fatigue: Oh my yes! The fatigue after being in then out of the hospital was HORRID! Took me 10 minutes to get out of any chair -if lucky? and the idea of ‘walking’ around a small store seemed overwhelming. Once finding a neuro who didn’t think all of it was in ‘the head’…even tho early Nerve conductions tests He’d done showed problems….I simply asked for PT! I knew I was losing leg, ankle foot, hand, wrist and arm strength and quickly…to the point I almost felt as if I was spraining ‘something’ or other just in the simple acts of getting up, down, cleaning etc. The PT helped/helps a LOT…just be sure and clear that you want to go into a PT program that gives you the tools or resources to be able to keep it up at home…w/o expensive equipments. There are lots of good things to be done here that help w/balance deficits, and strength issues. Even learning how to walk properly with a cane, and a cane that’s the best height for you!
Eyesight; This is a quirky one, for me and a few others. It’s not listed as a symptom, but, I got an appetizer a month before my numbness stuff started: I went in for my annual eye exam as I’d had cataract surgery over a decade before..I thot there were changes..when I’d gone to my optomotrist, it’d changed a LOT…then right before the worst, the script went BACK to what it was before? There were BIG changes, tho temporary. After starting IVIG, I had vision ‘clouds’ intermittently…3-6 times a day, often lasting an hour or more. I was lucky to see a ‘neuro-opthamologist’ who ultimately diagnosed it as: non-aura migraine…tho the issue abated, I still have ‘foggy vision’ moments. Worse tho, I cannot NOT for the life of me, read either a book or a magazine since I got the CIDP! I can ‘read’ stuff endlessly on my computer, but I really miss the several books I’d been reading each week! I really feel like I’ve lost something special. But, life changes, and goes on.
Maybe it’s because I can’t FEEL the pages anymore? Dunno.
Soo, with this background, and that of so many other kind people here, expect anything and everything. Then, appreciate that all of those possibilities do NOT happen to you!?
We have all come here by different circumstances and roads….Don’t ever feel that asking a question is ‘silly’. Sometimes those ‘sillies’ are the most important questions to ask….Read back to prior posts and you will find that you are NOT the only one to ask questions. That is how we all learn, and keep doing so! You can and will get well, it just takes a whole lot of time [years sometimes-no quick fixes for this] Wish I could say it were possible, not yet, but in the future? Maybe?
AnonymousSeptember 25, 2007 at 4:11 pm
My questions on vision are has anyone had experience with IV IgG helping this, it there anything people have done to help with this other than break up reading tasks, will it go away??? and, should I be more worried about this than the walking problems (I am, because I feel that I could make it through life without walking much if that is what is required of me, but I cannot conceive of not being able to read and see (I teach and do research at an university). This problem with vision scares the daylights out of me.[/QUOTE]
It’s hard to say because everyone is different but my eyes have many more days now when they behave so you might get better. There was a time when I could only read large print for 15 minutes or so but now I can read regular print for a half hour at least. It took about a year to get to this point and I doubt I could steadily read for an entire day any time soon but it does seem to be getting better.
AnonymousSeptember 25, 2007 at 5:06 pm
Hi Deannie, Welcome to The Family. No need to apologize for asking questions, ask as many as you have, or just vent when you need to.
I have the vision problems, there are days when I have double vision, or just blurry vision, I have occasional days where I have good vision also. I have the relapsing/remitting type with acute onset, doesn’t follow any regular course. I found I have good days only after I get Alot of Good Rest just before hand. The vision seems to clear up on my good days in between my relapses, not enough to say its back to pre syndrome vision yet though. Fatigue is on the severe side currently, not bad enough to keep me in bed all day, but not good enough to accomplish much around the house either. This syndrome is a very individualized thing, staying positive does help quite abit in some ways. Try to get plenty of rest and see if that helps with your increased fatigue levels and vision problems. Take care.
AnonymousSeptember 25, 2007 at 8:51 pm
i had miller fisher variant GBS and blurred vision was my very first symtom and also the last to return to normal. I had blurred vision and was unable to move my eyes so had no peripheral vision. I was in hospital for 7 weeks and it was just at about 5 weeks i noticed i had some movement back. I still had double vision when i left hospital but that disappeared overnight about a week later. I think it all depends on how long the nerves take to repair … and with most things associated with GBS there is no way of knowing how long it could take. I had a referral to a neuro-opthamologist but didnt end up needing it. My eyesight is back to where it was pre-gbs (short sighted anyway!) although when i am tired i notice my pupils are irregular. I am due for an eye test so will be interesting to see if there are any other changes that could be attributed to gbs.
The problems with your vision can be so unsettling – it makes it hard to walk, read, watch tv – not to mention drive. SO many things we take for granted
AnonymousSeptember 25, 2007 at 10:47 pm
hi deannie & welcome,
you need to rest much, much more & do much, much less than you are now doing. for your eyes see my post to kelly.
kelly, do the docs blame her optic nerve damage on gbs? i ask cuz gbs is not supposed to effect that nerve, but we once thought the world was flat. gbs can effect the 6 muscles that shape the eye which can cause blurred vision.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 26, 2007 at 9:34 am
Gene – Emily’s optic nerves were NOT damaged. It was her cranial nerves. I don’t know what I was thinking when I said her optic nerve in my response. Geez, you’d think I would have paid more attention, LOL.
Personally, I do believe that optic nerves can be affected by GBS. I’ve read too many articles on the eyes being affected to think any differently. If it can affect your lungs, bladder, bowels, and heart then why can’t it affect the optic nerve too? There’s no rhyme or reason to the way it affects each person.
So anyways, a correction is in order. Emily’s CRANIAL nerves (I think 6 & 7 but I could be wrong. It’s all kind of mushed together in my brain at this point) were affected & caused her eye paralysis.
AnonymousSeptember 26, 2007 at 10:23 am
Thank you all so much for the advice. I am trying really hard to look at the positives and tell everyone that I cannot think about what I cannot do now, I have to concentrate on what I can do–which is still a lot especially since, fortuantely, my world more evolves around thinking than physical effort. When I read these, at first I thought that there IS a lot of vision concerns out there, even though there is not “official” reporting of it and for a number of people, the vision concern is really persistent. But if you think of it as Julie says, I can still read and in two months it has not gotten significantly worse, just ups and downs, so this is probably more important to hold on to. Right???
In answer to the questions Kelly raised. I did have an MRI of the brain and whole spine at diagnosis. I did not say but I had had arm pain/impingement for several months before onset and people thought that there was something in my neck in the spinal cord to tie together arm pain and new onset trouble walking and the paresthesias (plus I still had reflexes). I had another MRI of neck spinal cord and EMG a month ago because of the persistent trouble walking, the fact the left side is affected more than the right, I was getting worse, and the MRIs at the beginning had a subtle abnormality. The last MRI was okay. The EMG was read as stable (although the nerve tested in the arm was affected (not before), one nerve in the leg was a little better and one a little worse making the conclusion that it was basically the same).
For Homeagain, I am doing PT, but do not have a lot of tolerance. Mainly she is helping with trying to walk as normally as possible so I do not create new problems. Recently, the nearsightedness of vision in my right eye changed a lot on testing after being stable for years and years. I got new glasses, but this did not help. Like most almost 50 year old people, I have farsightedness from “old age” as well as nearsightedness for which I have worn glasses for 40years. I now wear the continuous bifocal type glasses. The blurriness is with or without glasses on.
Thanks for the advise from many to rest. I have been trying. For the last 5 days, I have been really careful to not walk more than 1200 steps, but I still feel like I have been run over by a truck. I feel worse than last week. No one has commented on the time it take to recover from worsening of the fatigue, but it worries me that fatigue gets so much worse and lasts so long. Over the months, I get a little better and then worse and it does not really seem to correlate with overdoing, but life is complicated and there is so much I want to do, that I am sure that is a significant part of it.
I have two questions to add.
1. Can people comment on the time it takes to recover from the bad fatigue after doing too much?
2. Can anyone comment on how you practically can make a balance between keeping muscle strength and not overdoing it?
It is truly wonderful to not feel so alone in this and to have a place to ask the questions that so concern me. Thanks for you patience with my wordiness. Again, God bless you all for your wisdom and kindness to each other.
With hope for cure of this disease.
AnonymousSeptember 26, 2007 at 12:56 pm
Welcome! Don’t ever hesitate to ask questions, that is what we are here for! We do not play the game of “who had it worse” or “who has it worse” here. Most people on this site have been affected by GBS weather it is mild or severe, it is scary and frusterating for sure. We are here to support you and encourage you.
My daughter had GBS in Spring of 2005. She was only 4 1/2 so some of her symptoms may not relate (because kids nerves do regenerate quicker than adults). She was completely paralyzed and she too had her right eye paralyzed. She does wear glasses today but the dr. did not find any permanant nerve damage.
Kenna has her good days and bad. Sometimes the fatigue causes her to have a lot of pain. Sometimes we don’t know why because it doesn’t seem she ‘overdid’ the day before. Some days she can do a lot and others she can’t. Our bodies are a mystry that is for sure!
My encouragement is to listen to your body and perhaps take things down a notch in your life. If you are a workaholic, you may need to just plain slow yourself down a bit for the sake of healing (I know, easier said than done right?!). Also, massage has helped my daughter a lot…
I wish you the best and complete healing!
Author of “Joy in the Morning”
AnonymousSeptember 26, 2007 at 10:24 pm
1. Can people comment on the time it takes to recover from the bad fatigue after doing too much? from days to months depending on severity & amt you rest.
2. Can anyone comment on how you practically can make a balance between keeping muscle strength and not overdoing it? you must recover from exercise in 12 to 18 hours or it is too much.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 30, 2007 at 9:03 pm
Hello, Thanks so much for your replies to my previous questions and kindness. It really helps a lot. I saw my neurologist again this week and there may be a little good news. Earlier there was discussion that I had the axonal variant of GBS. He said that he is not convinced this is true. I might, but this is atypical for either classical or axonal GBS on EMG/NCV. Atypical and unusual were used a lot in the conversation!
I have three other questions.
1. I do not really understand at all why if one over does activity, it might take weeks to months to get back to baseline. I understand that healing from GBS takes a long time because nerves are very slow to heal (either remyelinate or regenerate damaged axons). But overdoing seems like it should be a temporary thing–overstretching muscles or depleting neurotransmitters or something. I know I am getting technical, but I really want to know. I have read a lot about fatigue in GBS (including the two articles in the prior GBSFI newsletters on fatigue) and just do not get it. I realize no one really understands it completely and that in no way negates that fatgue is present. The body is often a mystery. I guess the real question here is does overdoing it cause more damage (that takes a long time to heal) or is it just stupid (because you feel awful for a long time after it). I really, really do not want to get more damage; none of us do. I also do not want to feel like I have been run over by a truck, but sometimes life is not simple and other people really need help.
2. Both walking and vision are worse right after I wake up in the morning, then they get better, and then as the day goes on and I get tired, they both deteriorate. Have others experienced the mornings being worse as well? I do not know if the improvement is just the “adrenalin” rush of getting to work and jumping into a new day of trying to help people.
3. Can you have new symptoms and how does one know when there is progression or CIDP rather than ornery GBS? I am nervous about the fact that some of my toes have become numb in the last month and left face are more numb than it ever used to be and if this means ongoing damage or CIDP. The tingling and pain in the legs and arms is also worse now than ever before and my left quads last week started giving out like I am going to fall. I think I did way too much two weeks ago and the left leg strength is a little better after doing less last week. I worry that the muscles are getting weak with not walking, but trying to walk/exercise is making the rest of this worse. The exercises do not seem to be maintaining strength (or I am getting worse?). I understand I am still in the healing phase, but do not expect things to get worse or new things to appear like foot numbness. Does this happen and is it still acute GBS? I hope that the worsening numbness is just part of the complaint my body is making about being a hard-core workaholic but the numbness does not go away with rest. I am trying my best to find new ways to live and work without overdoing it so much, but it takes a while for an old dog to learn new tricks and modify several decades of habits of ways to do things. I have never been athletic, but I have always been quite active.
God bless you all for your wisdom and kindness to each other.
With hope for a cure for this disease.
AnonymousSeptember 30, 2007 at 11:30 pm
An answer to #2 ~ mornings were terrible for me and at times still are! It almost feels like my body has to “re-remember” every day what it is suppose to do. With the years it has improved but not so that I can always count on it 🙁
Gene and Ali are excellent at answering the kind of questions you have asked, so I hope that they will be along soon 🙂
AnonymousOctober 1, 2007 at 5:19 am
No need to apologize at all. You would be a weirdo if you weren’t at least a little freaked out. GBS is an unpredictable condition. I’ve learned a lot as well from reading the posts and replies on this forum. My husbands legs are completely paralyzed, but his upper body is not affected at all, at least not that he admits. I’ve learned a lot by communicating on this forum. I hope that when my husband Jacob gets out of jail on October 14 that he will take advantage of the information and support that is offerered here. Keep asking questions and vent your feelings. It’s ok here. Isn’t that cool? Best of luck to you.
AnonymousOctober 1, 2007 at 8:36 am
I have read through your posts and a LOT of what you are going through is the same as me. My onset was in April of this year, and atypical, kept reflexes, left worse than right, and terrible muscle fatigue. I have also had increasing neuropathy which has kind of worried me since I’m not taking anything for it and I thought it would get better rather than worse. I also cannot do much in PT. I walk, but it is a challenged walk and not coordinated. If I do one thing too much in PT, I have jello legs for the rest of the day. The first PT session where we did anything with my quads, I couldn’t walk for 4 days. When you say the number of steps you can take, I don’t know those numbers, but my numbness seems to get worse with my fatigue. Friday I was exhausted and couldn’t even think straight. My mental clarity does go down with my fatigue. So, I don’t have answers to a lot of your questions as I am on the same recovery roller coaster, but at least you will know that some of what you are experiencing is not unique to you. I am 47 years of age as well. Oh and my whole symptoms/attack started with blurred vision. I went to the eye doctor complaining about it, and within a week everything else happened. I have to use my reading glasses all of the time, but that could be coincidence too. Try to stay positive! That’s what I am working on, but it is a roller coaster for sure….Gabrielle
AnonymousOctober 1, 2007 at 3:17 pm
Aaaah the wonderful feeling of getting up in the morning and feeling like your body just wont work …… and the pain! No, seriously it is absolutely awful and I hate hobbling about, and trying to walk down the stairs. All I can think of is that having been sedentary for a few hours, the damaged myelin or axon (which gets the muscle fibres working) takes a while to ‘get going’ and warm up (I know that does sound simplistic, and could very well not be the case). As it is they have to work harder because of damage, now they have this obstacle too.
Geanie and Gabrielle,
This one goes to why the fatigue if we overdo it. Unfortunately it wont be over technical because I dont quite understand all the tech ‘stuff’. But I have had a wonderful opportunity of speaking with, and listening to Dr. Carol Leiper who is a PT and an Ajunct Professor of Physical Therapy at Arcadia University in PA. (I will try and word it in some kind of order from my notes and her slides 😮 ).
Muscle overwork in GBS (CIDP too) is due to the damage to either the myelin or axon. This destruction or damage results in a lower ability to recruit and activate muscle fibres, and these activated muscles therefore have to work so much harder.
Lets take for instance shoulders …… From what i understood about overstreaching … It causes something called Subluxation, and this means that muscle is stretched and does not support or hold the the scapula (in the case of shoulders) in the “correct” way. Apparently the subluxation can be permanent even if the motor activity returns.
During the Rehabilitation Phase (which can take 2 years, but residuals can still be permanent) not only should things like restoring function, strength and indurance be the aim, but also things like maintaining the musculoskeletal system, the joint integrity etc need to be looked at too, because as in the paragraph above, it we overstreach and overuse, these can be affected too – leading to what i understood to be long term damage, or a whole lot of other damage to worry about.
It was pointed out how important it is for muscles to be supported while they are weak. You cannot just expect a rehab patient to reach out in order to pick something up, the arms need to be supported when they reach eg. arms should be rested on a table and then they should reach with the support of the table. Likewise when going from a lying position to a sitting position, the person needs support until such time as they are strong enough to do it themselves. Strengthening has to do with low repetitions and LOTS of rests in between (every few minutes).
Dr. Leiper said that a scale of ‘Rate of Perceived Exertion – [I]very very light being the easiest, very very hard being the harest[/I] – the exertion level [B]should be[/B] FAIRLY LIGHT .. to .. SOMEWHAT HARD.
So from what I understand, overdoing it as well as doing things incorrectly causes problems not only for the ‘current’ muscle problems, but it damages and causes problems for the bones and joints. Likewise, if your body is used to sitting, lying, excercising in an “incorrect” way, it is obviously not the way it is supposed to function, and because it is not corrected, or someone tries to correct it at a later time, it will cause more pain, fatigue etc. (I hope you understand what I’m trying to say here – my brain is frizzled at the moment ):p:o
It was also noted that, residuals can be life long, and the common long term problems are:
[*]Other foot muscles
[*]gluteal musches[/LIST]and of course FATIGUE
One topic was that of Energy Concervation. No matter where you are in your recovery or ‘phase’ (even 10/20 or more down the line), if there is fatigue or weakness of the above one had to do the following (I KNOW, I KNOW, Its difficult, but its the only way so far and I battle this all the time)
[*]Prioritize your energy expenditure
[*]Exercise should not prevent you from completing your other daily tasks
[*]Pace your daily activities
[*]Learn to be flexable
[*]Accept and try devices that could aid or assist
[*]Learn to adopt an activity-rest-activity-rest cycle.[/LIST]I also learned how important core strength is. I have always known it is important, it was explained that whithout this core strength (torso muscles) the patient cannot be expected to go into arm or leg strength successfully.
Im sorry, I dont have anything more scientific to really share with you, and have probably not answered your question 1 very well and have told you what you know already. It was s so good to hear it from someone who has studied and worked with GBS, showing the pitfalls of going off on a tangent without doing the basics, like core strengthening, support of the body when doing exercise etc. Also the fact that with certain illnesses, one being GBS and CIDP, that no pain, no gain is usually NOT a good philosophy – as we all already knew.
My mental capacity is definitely not what it used to be! It seems GBS/CIDP’ers tend to have a problem in that area unfortunately. maybe one day we will have some kind of answer.
AnonymousOctober 1, 2007 at 5:36 pm
Thanks for the reply and the explanations of the muscle fatigue. It is a bizarre thing for sure. And I used to work out to the “no pain no gain” rule. Now, it is “some pain oh no rule:)” I still leave therapy shaking my head at what I can’t do. A friend of mine just received a new exercise program today and he was sharing with me. Oh my goodness, it is lightyears from where I am! I had to laugh because I am straining to do the 3 pound weights:) I will say that I totally agree with the core strength rule. And if anyone questions why they need it, I can vouch how it has helped me. I was all over the place when I walked, like a spagetti back. We have incorporated core work for the last two months and it has made a difference in my gait. It’s still not good, but that is more of a leg/quad/muscle problem. I’m impressed that you are so active on this board when you were diagnosed so long ago. It’s a horribly frustrating disease to be dealing with sometimes. But very, very helpful to hear from those who have been there.
I have another question. What do you tell people when they ask what’s wrong with you? Not necessarily you now, but every day someone asks “Oh did you hurt your back/knee/foot/leg/etc”. It’s such a hard thing to explain. I have just started saying I have a problem with my nerves and it affected my walking. I work in a large office and I didn’t want everyone to know what was going on and have just started going back in the office. And my other job is with patients and they ask all the time. Just curious because GBS means nothing to the normal world:) Thanks again! Gabrielle
AnonymousOctober 1, 2007 at 5:58 pm
For the rist 17 to 18 years after GBS I refused to speak about it to anyone. However, since being affected badly with post GBS it was a little hard to ignore, so I became quite involved. I still dont really speak about it to the ‘outside’ world much, only really if they ask specific questions, and honestly I also dont know exactly what to say. I tend to stick with what you say to your collegues, an illness that affected my nerves and now decades later, its causing a few problems because of the damage back then.
One thing that was mentioned on Friday was that repetitions are more important than weight. While weight does come into it, it shouldnt be a strain. Remember the rest every few minutes if necessary.
AnonymousOctober 1, 2007 at 7:20 pm
Thanks Ali: The info is tremendously helpful to me and you state it very clearly. I have been dealing with all this for almost three years now but it is still very helpful to hear info in new ways. It is a good reminder as I struggle with muscle weakness and nerve damage. Thanks for taking the time and effort, Jeff
AnonymousOctober 1, 2007 at 8:59 pm
We are working on repetitions instead of increasing weight. I can do the three pound weights and that’s it. But I could only do a few reps and we are just now trying to increase. My PT is awesome about asking is this too much, etc so we can stay within the fine lines of what’s enough and too much. I explained to him once how I start my day with thoroughly completely used up muscles, as if I had been doing weight lifting all night long. So when I arrive for PT, I already feel spent and only have a little left over. I think he finally understood what I was saying when I explained it that way. He knows I am not a slacker because I will do anything and everything to see if I can do it.
It is a little difficult to explain to people what’s going on. But my current answer seems to be OK I guess. It’s also a little disheartening to think about residuals and post GBS down the road. But there isn’t a think I can do about now is there? So…thanks for chatting, it was helpful! Have a good night! Gabrielle
AnonymousOctober 1, 2007 at 9:56 pm
Dont you all (y’all) feel ever so slightly better for knowing why we are so fatigued? Its more of a psychological lift than anything else – knowing that when this does happen it has nothing to do with imagining it. I still have periods where I have really good days and end up doubting myself.
Gabrielle, its so hard to look at what might be. I’m trying very hard to try and take each day a step at a time. This is sooo hard, and I fail dismally a great deal of the time, however, maybe, just maybe we never reach that worst case scenario we like to paint. Funny thing is that out of this has come certain ‘easy come easy go’ attitude for me, in the sense that if we have something planned for the weekend and I’m not feeling up to it, its much easier for me to cancel it and say ‘oh well, maybe next time’. If we go on vacation, I wont push myself, if I feel up to certain things I will do it, if not, everyone understands its just not meant to be for me at that time. Its taken a long time to get to this point, and I still rant and rave and cry and become very depressed, make no mistake about it, but I am coming around 😮 . I think that my husband now understanding a little more has helped a great deal, He even sat in on some of the presentations at the conference and realized that exactly what I had always said was spot on:) .
AnonymousOctober 2, 2007 at 11:09 am
Thank you all so much for your replies and support! Gabrielle, it is a blessing that you share having a similar experience as me. I wish neither of us had it, but it is really awesome that I am not alone in this. Ali, it is also fantastic that you share all this with us in such a conscientious and kind way!
I have still more questions, but they are getting shorter. I have cut down on physical activity, but I feel worse than last week–like I have been run over by a semi loaded with concrete. Do you have to sometimes stop completely and stay in bed for a couple days? Is there anything else that helps if you have overdone it?
I got a pedometer to wear to try to quantitate physical activity–this is why I talked of the number of steps. Because my gait is really not normal, the pedometer does not capture every step (about 2/3 of them, I think), but I think it is probably relatively consistent in the number it captures or not. Because it is hard for me to say no to people or explain when enough is enough now (since it is SO MUCH less than I used to do before), I wanted a way to tell them when I was nearing the end of endurance as well as have a stopping point for me. It also should serve as a way to see when I am better, I hope!
Regarding the question about what people tell others about this disease, I work a lot with children and families. When they ask, I say that my nerves and muscles are not talking to each other very well right now or that I have a temporary medical condition where the nerves and muscles do not work together like they are supposed to do. I say it this way because I think it helps people understand the strange gait and fatigue a little, maybe, and it emphasizes that this is temporary. I realize now that it may be prolonged temporary, but I have to hold to hope. I also say it this way because I do not want to put the emphasis on nerves. I got a bit traumatized at the beginning when one of the doctors covering for my excellent and kind doctor told me it was all in my head. This was when no one knew what was going on (with the assymmetry and fact I kept reflexes and spinal protein was okay). I knew my nervous system was progressively shutting down and he told me its in my head and discharged me! So, since people sometimes think of nerves as mental, I always put muscles in there as well.
Well, this ended up not a short post after all, but oh well.
Take care all of you.
With hope for cure of these diseases.
AnonymousOctober 2, 2007 at 11:41 am
if it is fatigue, the more rest the better. i used to sleep 20 hours a day. re: other options – some say provigal [sp] helps some, if taken before you fatigue. rest lying down is the biggie. you rest till you feel ok. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousOctober 10, 2007 at 10:19 pm
I don’t have GBS or CDIP personally. It’s my husband who has the problem, and it’s a problem. I’d be willing to bet that everyone here would agree that it’s important to “listen” to your own body. If the excercise if causing you any pain you need to slow down. You may run into doctor and nurses that tell you otherwise, but there they are not the ones who are gonna suffer the consecquences. GBS is not like a broken foot or a sprained ankle where activity makes it better. Since GBS is so uncommen, you may get doctors and nurses encouraging to be more active, because they don’t know any better.
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