AnonymousOctober 4, 2013 at 10:29 pm
Let me start off by saying I am a 43 year old male that is blessed. I got GBS in Dec 2011, weakness, painful/heavy limbs, “crawling skin”, exhaustion/fatigue, etc. I had multiple trips to my family doctor trying to figure out what was going on. By the time I ultimately got in to see a neuro, and told him my story, my body had already figured out what it was doing wrong, and started producing the antibodies to heal itself. He said I was a “textbook case” because my symptoms began approximately 2 weeks following a sinus infection. He performed the typical conductivity test, which showed excellent conductivity, and told me it would take at least a year to get my nerve damage totally healed. Since then, I have had times where both forearms got slightly numb on top, and both hands hurt in the joints like I would imagine arthritis would hurt. Additionally, both legs from the knees down would have a slight numbness to them. Finally, both hands and calves would feel tight, like they were “full” of fluid. These flare ups tend to be seperated by a period of 4-8 weeks.
Again, I am blessed, and thank God every day for His love and my recovery. However, I have no one around me that knows anything about how I feel, and I just wanted to know from this group if these type “residuals” were typical. I don’t want to just chalk this up to GBS, and overlook the potential for this to be something else, like rheumatoid arthritis or Multiple Sclerosis. Nor do I want to be a hypochondriac. That is the reason I joined this group TODAY.
Thank you in advance for any thoughts you can offer. GBS has changed my perspective of life in a more precious way than I could ever understand before.
October 5, 2013 at 1:28 am
One thing that seems typical about GBS is that none of us seem to have the exact same symptoms and residuals. Nor do we all heal at the same rate or respond to treatments in the same way.
Because of the wide variety of GBS disorders and our individual body’s ability to fight off these various forms of GBS, each of us ends up with different levels of left over symptoms.
You are quite fortunate to have the ‘residuals’ you have stated. Some of us have considerably worse symptoms and have been dealing with them for much longer periods of time.
I’m not too sure that all GBS nerve damage can be completely reversed, maybe for a few. Maybe I’m overly pessimistic, but it’s more likely that we won’t fully regain ALL the abilities we had before GBS. I have experienced a great deal of improvement since 2008, but still have tingling and numbness from head to toe.
Many sufferers still have pain many months and years post-GBS. I’m fortunate to not have had much pain at all; others can have bouts of bad pain.
The flare ups you mention could be the result of your nerves reconnecting as the Myelin are being rebuilt. It could also mean that you may have a more chronic version of GBS or one of its variants.
Symptoms of GBS often start with tingling or numbness in the extremities of the body. The hands, feet, and face are often affected first.
People with GBS suffer from a wide range of symptoms that may include:
– weakness in leg, arm, and facial muscles
– tingling, numbness, creepy/crawly feelings
– problems with speech and swallowing
– pain in the muscles of the back
– shortness of breath
– decreased ability to move the eyes
Symptoms typically progress over a period of a few days and are usually at their worst 2 weeks after onset. Then they slowly decrease over time. According to the NIH, about 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack. Ref: http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm
You didn’t mention what treatments you were given for your GBS. Did you have IVIG? Plasmapheresis? Take medicines like Prednisone? Did they test for elevated protein levels in your spinal fluid? How all this was dealt with might provide some insight into whether you have something other than GBS.
AnonymousOctober 10, 2013 at 12:09 pm
Thank you for your input. I did not receive any treatments for the GBS. Nor do I take any medicaton. Like my neuro said, I am a lucky one. In addition, they did not test my spinal fluid for elevated protein levels. The main test ran was the nerve conductivity test. My neuro tested me twice. The first was approximately 2 months following the onset of my symptoms. The second came approximately 6 months following that when I felt like I was having a relapse, but everything test very good. Again, I feel EXTREMELY lucky.
Because my issues are symmetrical and my main issues are weakness and joint pain, I do feel this is now just another residual episode presenting itself. However, I do have a visit planned with a different neuro to get a second opinion, as I do not want to leave anything to chance.
For those that have residuals that tend to “come and go”, how often does this happen for everyone? When they do flare up, how long do they stay? Is there anything you do to minimize the impact? I apologize for asking so many questions, but that is why I joined this group, to have others to talk to about GBS and its impact on our lives.
Thank you all in advance for your help!
November 4, 2013 at 4:37 pm
<quote>For those that have residuals that tend to “come and go”, how often does this happen for everyone? When they do flare up, how long do they stay? Is there anything you do to minimize the impact? </quote>
For me – when I get tired. Duration is usually until I catch up on needed rest. Often times, I don’t even realize that I’m that much in need of rest but the residual symptoms remind me.
I find that the better I take care of myself, the less often I get flare-ups of things like dizziness, tingling, muscle tightening and pain. That includes diet, rest and mild exercise that I’m capable of.
I don’t know if this applies to others but I have read that fatigue often brings on GBS patients’ residual symptoms.
<quote> I apologize for asking so many questions</quote>
Don’t apologize, that’s what we’re all here for – to help and support each other. Ask all the questions you want/need.
AnonymousDecember 18, 2013 at 10:47 pm
I was 13 years old when i had GBS, so i dont know alot about what they did or gave me, I know i had forgive my spelling plasmaferess?, and I know i was on some sort of predinose cause when i finally got to go home they had to wean me off of it and they told me not to shave it would go away…what i am asking is can residuals last that long?I am now 44 years old, if so it would answer alot of questions, and how can i found out what the more common residuals are and if they can be treated, can migranes be a type of residual? thanks for any info.
April 5, 2014 at 9:10 pm
I also had nerve conduction tests great we (The DR Sees results Great what is he doing to stop or revers any progression? If Prednisone,IVIG, Plasma Plasmapheresis not been the coarse of action, I’d look for another Dr. I went to MAYO in 84 and they even refused to use the word GB, but yea there is nerve conduction damage go home and maybe try Plasma Plasmapheresis I did and we had to borrow a machine from the wonderful organization RED CROSS. A Kidney necrologist Dr knew about separation the red cells but he did not have a machine or person to operate the machine. Again RED CROSS found a qualified Nurse and one of their persons to observe her and see that the hospital closet assigned to us was adequate. It worked for about 2 years. In all 8 times, I ran out of good places for a central line. But thank GOD I’m 71 now with residuals (gapbrine, nerve stem problems) Lots of other 71 yr things but I can ride a recumbent bike for 5-7 miles in 1/2 hr. Thats 80 to 90 pumps per min. So hang in there, get another Dr’s opinion and pray to your maker.
bill whit long time since post
September 3, 2016 at 12:36 pm
At age 46 in 1991 symptoms began in toes in early morning and by noon I was paralyzed unable to speak and in the ICU; in addition I had extreme headache; diagnosed spinal etc; 2 weeks in hospital and 5 plasmapheresis treatments; went home able to stand with assist and sit; only physical rehab available was done at home/fmly from old nursing text books and library info.
Months before I could walk unaided with canes; years before I could walk without looking handicapped. I am very grateful and blessed at age 71 w in own home.
Residuals: migraine, early menopause, periods of fatigue, neuro aches arms/legs, muscle weakness, absence of reflexes, feet and fingers; swallowing and speech. Lifelong phys and gen health enthusiast. Sinus infections and GERD prior also arthritis.
Other autoimmune diagnosises and labs since. Plaquenil this past year for AI connective disease. Anyone else with additional autoimmune ?
AnonymousApril 7, 2014 at 9:35 pm
I had a diagnosed GBS in Feb. 2010. I still have some residuals of nerve damage mostly in my left foot…..the L side of it, the bottom under my toes, the ankle and a little on the left side of my leg. What this is (mild and not painful) is mostly a numb feeling. All of my fingers and toes used to feel like I have cardboard around them but as the nerves got better, that feeling also got less. My fingers are all back to normal now.
I have more feeling in the toes, too just lately. My right foot is a lot better than my left. What I have found that works for me is foot massage. I bought a massage machine for the bottoms of the feet. (Homedics) at Walmoart. I would think whirlpool would also feel good. I try to put my feet on it at least once a day and have it by my computer so it’s not so boring when I use it!
Recently, I had a couple of reflexology massages and my feet tingled slightly for hours afterwards, a good thing, as I think it is working and increasing the circulation again. My left heel was numb a few months ago, and there is a lot more feeling in it now. I also try to exercise and walk, eat healthy, get enough sleep as well as de-stress my life as much as possible (I like to knit!!) and all of these things seem to be helping my body heal.
My right foot is pretty good, and the rest of me is also almost normal. I did have some joint discomfort as you described, mostly in my knees and ankles and could not put any pressure on my knees for the pain (like no kneeling as it really hurt ) I still can’t run well, but I can run a little bit now. I can also kneel without severe pain, but my left knee is quite stiff.
My lungs are also getting better and I’m not as short of breath, but I still can’t sing very well and hold a tune, and I could before the GBS. I do the elliptical machine (can’t walk on a treadmill with my numb foot) and this also helps my feet and lungs. I am thinking maybe more massage for me and maybe some physical therapy to strengthen my left knee and ankle might also be beneficial for me. Hopefully these things would work for you too, especially the massage. I do not take medication for the neuropathy as it is not life altering. I also am grateful to God that I can walk and do everything I want to do. But if I can get a little more feeling back in my left foot and a couple toes on my right foot, I think that would improve my balance.
Has anyone else had good results from massage? Or Acupuncture? I haven’t tried acupuncture yet, but am considering it if massage doesn’t continue to work. But I’m noticing some results from deep tissue massage.
Good luck and keep us posted on your progress?!
May 6, 2014 at 11:07 pm
I was hospitalized for GBS in January of 2012. At my nerve conductivity test, I was told that it would take me until January 28, 2015 to be as recovered as I’m ever going to be. I struggle not to be scared of that because of the physically obvious residuals that I still have on the right side of my face and body, along with bouts of pain, spasms, really intense eye pain, fatigue, mental fog/blocks, numbness and anxiety. What if I don’t make it to 100% recovery? That’s my fear.
However, I work at trying not to let that sentence feel like a noose. I try to remain hopeful, listen to my body and keep it moving as normally as possible. It has helped. I’ve also tried therapeutic massage, which worked absolute wonders for my most painful area! It’s expensive though, so haven’t been back. I’ve also started taking lecithin, massage my feet and am eating better than before I got sick. I also want to try alpha-lipoic acid, which was recommended in another thread.
When I’m tired is when most residuals ‘come out to play’.
I’m not convinced that doctors can realistically give us an ‘end date,’ although they managed to scare me with one. I think the body will heal at it’s own pace, in accordance with its ability to do so. Maybe your bouts of leg issues are just slow to heal? Maybe not but you came down with GBS only one month before I did and they’re saying that I am still healing, so why not you, too?
May 7, 2014 at 9:59 pm
I look at the topic differently than most, Sraw-rats. To me, residuals are effects related to when the neurological system is no longer in the process of recovery. That is, after three years or so. Slow as it may be 2.5 years out, your body is still recovering.
Residuals are GBS-related physiological and psychological effects that prove to be chronic conditions. But at issue is how they interact with other issues not directly related to GBS. For example, I contend with the residual of chronic fatigue, which is exacerbated by my chronic sleep apnia, and now diabetes. So, our residuals are not stand-alone condition, varying as they are.
Once you’ve come to terms that you must contend with residuals of this disease, I encourage you to get into some psycho-therapy. If you cannot return to your previous standard of living, that your lifestyle must adjust to accommodate this chronic condition, it may help your transition into an alternate, healthy lifestyle.
As for the conductivity testing, it is used, along with elevation of proteins in your cerebral spinal fluids, to make a definitive diagnosis. What you’ve described is an indication that your nerve connectivity is not normal. This is especially true if you are experiencing new symptoms.
July 27, 2014 at 4:10 am
I had GBS in February, and to this date I’m dealing with residua (tingling and pain in the feet, random shots of tiredness, lack of/reduced sensibility etc.), though it’s finally wearing off. I have a few unconfirmed suspicions on my own, but what I can guarantee were triggers for me were:
– heat variations: normally, pain and tingling occurred when I was at rest and under higher temperatures (26+°C);
– obstructed blood flow, specially during sleep, but also when seated for some time;
– vitamin D and/or protein deficiency.
I’ll post more details in a post of my own, but I hope these can be of help.
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