John Elligers
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April 1, 2022 at 4:57 pm
Jim-LA —
Thanks for your info, particularly the link to the Kleopa-Brown article. That article is the only recognition I have found by medical professionals of “post-GBS syndrome”. If I learn anything more — from the authors or elsewhere — I’ll definitely share it via the Forum.
March 13, 2018 at 11:54 amGH — Thanks for your reply. Agree that one person’s unusual experience could be anecdotal rather than evidentiary. The RNs/PTs in my large cardiac surgery unit thought my delay in regaining the ability to stand/walk was very unusual — until I finally started improving (rapidly), they wanted me to plan on going to an acute rehab facility rather than home. The only factor I can identify that might explain my unusual experience is the GBS, particularly the GBS residuals — except for the GBS, I was in unusually good shape compared to most bypass patients going into the surgery.
Seems there might be value for other GBS survivors (particularly those with residuals) in knowing about my experience (if it was, in fact, attributable to the GBS). At a minimum, if other GBS survivors who undergo cardiac bypass (or other multi-hour surgery) are likely to have a similar experience, knowing about my experience would relieve a lot of the stress/panic they might otherwise experience in the immediate post-surgery days. Also, GBS survivors who have more extensive residuals than I do might have their neural systems be severely compromised by the lengthy surgery — something the docs involved might not be prepared for. And, it might cause them to consider alternative approaches to the current problem — i.e., stenting rather than bypass for coronary artery disease.
April 5, 2011 at 9:12 pmDawn Kevies mom — Have been tested for diabetes and am not taking any unusual meds, but I will check the possible side effects on the few meds I am taking. A good idea. No rash on my hands, but they sometimes get cold (common GBS side-effect per this Forum). I talked to my internist about Raynaud’s and he said there’s some overlap, but thought mine was a different problem (although from my own internet research, it looks like Raynaud’s isn’t really a disease but more of a syndrome — a collection of symptoms + no particular treatment).
Guskno — Haven’t had the rash anywhere except below my knees, but the rash didn’t start (or at least I didn’t notice it) until several years after my GBS and it seems to slowly get worse. I’m an ordinary GBS, not a CIDP, so this may limit the effect to the lower legs where the nerve stimuli have the furthest to go and therefore where the cumulative effect of the GBS damage screws up the nerve action the most. Good luck.
April 1, 2011 at 2:43 pmThanks for responding. Homeagain — I skimmed the website you suggest and it has some interesting info; I’ll go back and read it more carefully. My internist had mentioned that he thought my skin issues were similar to those of diabetics, but that the mechanism causing the blood to flow away from the surface capillaries was probably different in a GBS survivor than in a diabetes patient. My quick reading of the website suggests that diabetes can attack nerve cells, so perhaps there is more overlap between diabetes-induced skin problems and GBS-induced skin problems than the internist thought.
March 31, 2011 at 2:38 pmThanks for responding — I haven’t had any IvIg or other gamma in many years, so my situation is probably different from your daughter’s. In doing searches on this Forum, I came across several threads addressing skin discoloration/bruising/irritation associated with IvIg, particularly for CIDP patients.
March 29, 2011 at 5:54 pmThanks for responding. At my wife’s suggestion, I’ve also tried skin lotion — no difference. Anyone else out there with blotchy legs post-GBS?
July 21, 2007 at 1:11 pmShelley–
For what it’s worth by way of encouragement — I was hospitalized for 7 months (on trach 4 months) in 1999 with GBS (age 50 then); for the first 3 months, I was completely paralyzed and only able to move eyes. My recovery was slow, but I was back at work (attorney) full-time by Sept. 2001 and have been about 95% recovered for several years. I still have minor balance problems and slightly weakened/stiff fingers, but other than climbing ladders and jogging (toe-drop would trip me up), I can do pretty much everything that most 58-year-olds can do — no wheelchairs, walkers, or canes. A little less energy than I had before the GBS, but I do not even need afternoon naps, just a solid 8 hours sleep each night.
By way of suggestions drawn from my recollections and that of my wife (who was my constant advocate in the hospital 12 hrs/day) —
Help the patient communicate by using a letter chart (A-Z in 5 rows + 0-9 across bottom) with the caregiver running his/her finger across the rows and the patient blinking or moving his/her eyes at the appropriate letter (write down the letters on a piece of paper).
Try to keep the patient in the hospital rather than going to a nursing home. Identify and emphasize any even minor medical issues that render nursing home care arguably inappropriate — i.e., feeding tube infections, trach infections, bed sores, elevated blood pressure, blood thinner meds, infections, need for chest x-rays to monitor pneumonia. See if there’s a hospital in your area that has a vent rehab unit and try to get the patient transferred there. In my case, the insurance required, as a condition of my staying in the hospital that I be able to do 3 hrs of PT/OT per day and that I make progress in the PT/OT towards being able to care for myself. My wife was able to convince the insurance people — with the help of sympathetic PTs and hospital administrators — that I could meet these requirements. Application of the standards seemed to involve a lot of discretion so being both nice and assertive in dealing with the insurance people helped. Re the insurance — ask the insurance company to assign a case worker or major-case-unit rep to the patient; most insurance companies will do this for major claims and the case worker/rep usually has much more authority/discretion to waive claim limits/requirements than the first-level claim processors. At my wife’s invitiation, the case worker assigned to my case visited my wife and I in the hospital and thereafter viewed me as a person rather than just a stack of papers. Argue to the insurance company that it will be cheaper for them in the long run to keep the patient in the hospital than to send the patient to a nursing home or home where the patient will develop multiple medical problems and need to go back into extremely expensive intensive care.
Find some favorite photos that the patient likes (particularly happy/restful photos like from a vacation or a picnic), blow the photos up to 8×10 or larger, and stick them on the wall where the patient can see them. The photos make the patient feel better and give the nurses/CNAs/PTs something to talk to the patient/caregiver about (making them think of the patient more as a person).
Try using a tape recorder/Ipod to play favorite (upbeat) music or books-on-tape for the patient.
If the patient has to do unpleasant or extremely tiring exercises (for me, I had to sit up in the wheelchair for 1 hour each day to strengthen my trunk muscles and this was depressing/exhausting at first), get some upbeat videos (perhaps exercise videos or music videos) to play on the TV while the patient is doing the exercises (watching Shania Twain videos actually took my mind off how tired I was).
Encourage the caregiver to talk on the phone to family/friends while the patient is in the room listening to the caregiver’s end of the conversation — this gives the caregiver moral support and, at least for me, overhearing the conversations made me feel better.
If the hospital day seems exhausting for the patient and/or caregiver, try to get all the hospital staff to agree to one hour each day when no one will come into the patient’s room (perhaps around 2:00 in the afternoon) — put a sign on the door — and then let the patient and caregiver sit quietly doing nothing during that time (perhaps the caregiver could read silently or doze in a chair and the patient could listen to a CD or nap).
If there are local friends/family who would like to help, set up a calendar and schedule people to come to the hospital on specific days/times that work best for the patient/caregiver. Initially, my wife scheduled people to come during the rest-hour and my wife would go down to a quiet room somewhere and nap or take a quiet walk. As I started recovering, my wife scheduled people to come during lunch and dinner to help her feed me (which was more a rehab exercise than eating as I slowly regained swallowing and gag reflexes).
If you have not done so already, contact several people through the GBS Foundation who, like me, have gone through this experience and are happy to talk on the phone with additional tips/suggestions as new issues constantly arise. There are probably GBS veterans in your area who could even stop by the hospital for a visit — one of my few positive memories from my time in ICU was when a local attorney who had survived a severe case of GBS 20 years earlier visited with us for about 30 minutes. Just seeing this healthy, active person made my wife and I feel much more hopeful.
Good luck.
John Elligers
McLean, VAAugust 27, 2006 at 2:36 pmThanks for the additional replies.
It sounds like no one has stayed on prednisone, even at a low dosage, for an indefinite period — years — in the absence of recurring GBS-CIDP symptoms.
I’ll pass your thoughts on to my friend.
John Elligers
August 6, 2006 at 1:35 pmThanks to each of you who responded to my question regarding whether my 80-year-old friend with no GBS/CIDP attack since 2000 should still be on prednisone.
Based on the responses, I had a follow-up conversation with my friend.
He reports that his current dosage of prednisone is 5 mg and 10 mg, alternating days.
He also reports that the onset of his GBS/CIDP was relatively rapid — 72 hours from onset to hospitalization with significant paralysis; he didn’t say how long to “nadir”, but my impression from previous conversations is that he — like me — hit bottom within 2 weeks from onset.
His only “relapse” occurred shortly after he went home from the hospital — about 6 months after the initial onset. Since that time — about 6 years — he has had steady recovery with no further relapse.
He is mildly concerned that longterm prednisone use can cause osteoporosis, but his most recent bone density scan shwed no problems.
His principal concern with the longterm prednisone use is that he is extremely vulnerable to bruising — the slightest impact with a table or wall can leave him black-and-blue and he finds that this significantly impacts his quality of life.
My understanding is that the SOP for CIDP patients is to taper the prednisone gradually to zero and leave the prednisone at zero unless and until the patient starts to experience GBS/CIDP symptoms — that is, muscle weakness. My friend reports that his doctor wants him to continue the prednisone because the doctor is concerned that, if he stops the prednisone and he starts to experience GBS/CIDP symptoms, the doctors may not be able to halt the symptoms. However, my friend although in his 80s, is in generally excellent health and routinely walks 1/2 mile/day as exercise therapy (using a cane); it seems to me that his doctor is being overly cautious in continuing the prednisone with its actual bruising side effect and its potential osteoporosis side effect.
Any further thoughts would be appreciated. Thanks.
John Elligers
[email]jelligers@msn.com[/email]
