November 21, 2017 at 8:20 am #113531
I am post GBS diagnosis and recovery about 21 years. I had it at age 8 or so, and I am now 29. I am suffering from, what I feel like may be residual symptoms. I am not sure if it is possible to have them this long after the disease, and was wondering if anyone else had similar experiences.
I’ve posted quite a few times about my questions surrounding GBS, CIDP, and what has been going on with my body. To say I’ve been confused is an understatement!
I recently got a third opinion from a Neurologist at a university hospital in Philadelphia about my symptoms. I received an EMG almost a week ago, and during the EMG got a little taste of what they thought about my condition.
During the first part of the EMG, a tech tested my motor and sensory nerves. The doctor came in and said that most of my nerves were working properly. One nerve out of the 12 that they tested showed demylination. Then, the doctor did the part where they stick the needle into your muscle. This is the part where it seemed like things were not normal. She mentioned the word “neurogenic” and when I asked her if they looked normal, she said no. She said it looked like my nerves had damage previously and fixed themselves. She didn’t give me much information besides that, and I am waiting for the results in the mail and for the doctor to call me if something else needs to be done. She said it does not seem like active CIDP.
Basically, I am giving some back story because I am wondering if anyone is this far out from their diagnosis and has similar symptoms or experiences. Some symptoms I suffer from are a warm water sensation running down my left leg [this was leg that had the demylination, interestingly enough], numbness and tingling in my feet, a “crawling” sensation that usually starts in my head, lower back pain, urinary incontinence, and extreme fatigue. I have gone through bouts of muscle weakness in both legs that have affected my ability to walk long distances, and have actually rented a wheelchair in the past for some events and used a rollator or cane sometimes. I am fine now, but wonder why this happened and why these bouts of weakness seem to go back and forth.
No one really seems to know, and I hoped maybe the members here had some insights.
LiamNovember 21, 2017 at 4:03 pm #113532
Are you going, or have you gone through, any extra amount of stress lately? Stress can do the weirdest things…November 21, 2017 at 4:33 pm #113533
I feel as though I am under less stress lately. I still am not leading a totally stress-free life, and do have a bit of stress in my life. But, I wouldn’t say there is a spike in stress in my life. [Aside from the usual ups and downs and not knowing what is wrong with me!]
-LiamNovember 26, 2017 at 10:49 pm #113537
I think of a residual as something that remains after your recovery, and which will be with you indefinitely. Are referring to new symptoms which you have not experienced for many years?November 28, 2017 at 8:01 am #113540
I have a very flawed memory.
I have been experiencing urinary incontinence for many years. I feel like that may be a residual effect for sure. The other symptoms, I do not really remember having them before. It is possible that I am just forgetting. It is times like this that I wish I had past medical records or a medical journal that I kept!
Thanks for your time,
LiamDecember 29, 2017 at 1:02 pm #113671
I had GBS in 1972 when I was 21. I was fortunate in that I was living in Trenton, NJ when I became ill – and in less than 24 hours I was at the University of Pennsylvania’s Medical School Hospital – at the time, a central place on the East Coast for GBS patients. I DID NOT have plasma exchange OR hemoglobin transfusion/Ivg treatment. I was monitored closely; in a few hours, I had a tracheotomy in early evening – because I would not be able to breathe – which did occur around 2 AM. I was in the ICU for 3.5 weeks and in the hospital overall for 3 months. I was then able to go home and then go to a nearby facility for Physical Therapy (PT) for several months. This all occurred in March-August time period; I was able to go back to college in September, using braces. I graduated in December 1972.
I then went to graduate school and stopped using braces, even though I had severe foot drop in both feet (but nothing else!). I then worked at one job for 35 years and raised a family of 3 boys with my wife.
While I could not run anymore, I remained active – mainly hiking (and some swimming) and birdwatching.
In the last few years, I have noticed more problems with my balance – particularly, my ankles are less stable. After falling a few times and visits with a podiatrist, I have started using a small ankle brace one one ankle – which does give me more stability. I do have AFOs for both my feet – just in case – in the closet for now. My knees are fine, but I am walking less miles. And am getting more tired each day (but as a 67 year old, that is expected).
REGARDING YOUR SPECIFIC SYMPTONS:
– a warm water sensation running down my left leg [this was leg that had the demylination, interestingly enough] – NO
– numbness and tingling in my feet – Occasionally. EXCEPT: Two weeks ago, I could not put weight on my left foot – after getting an X-ray AND MRI – nothing broken and no damage other than degeneration (I have arthritis in both feet; I have fallen twice – broke my left foot and later broke my right fibula – but am “fine” now_
– a “crawling” sensation that usually starts in my head – NO
– lower back pain – YES (but I attribute that to lifting my twin boys and walking with them for awhile while they were 3 years old)
– urinary incontinence – occasionally
– extreme fatigue – occasionally – but usually due to a cold or a long walk
– bouts of muscle weakness in both legs that have affected my ability to walk long distance: YES! – I am going to see a Neurologist in early January to see what this is about
I have tried to find doctors or people with a long-term history of GBP but with no success – until I randomly found your note. I wonder if there are books/reports/publications about people who have had GBS for a long time – do you know of any? Or Doctors who have seen GBS patients for a long time?January 2, 2018 at 5:30 am #113704
I was 12 years old when I came down with GBS. I had no ivg transfusions or any treatment other than physical therapy and occupational therapy for 8 years. I was left with weakness in lower extremities especially the ankles. Could not do tiptoes, run etc. I walked unassisted and was very active, bike riding and swimming. I overcame alot of issues associated with the muscles that never returned.
Fast forward 42 years later- knees in last few years retaining fluid. Right knee is worse. Have arthritis in both knees. Painful when walking longer distance and instability in ankles. Snow, sand, rocks, I cannot walk without assistance. My feet are like jelly and no stability. This has came on suddenly as in August of 2016, I was walking my dog 1 Mile a day.
One symptom you described I also have had-
The water trickle sensation down my calf! I literally had to feel it, it was so real but nothing there, odd! I have talked to Doctors (a lot of them) and they look dumbfounded and said it is Not the fluid buildup in knees as it is isolated in knee area. I have been to a dozen doctors, orthopedic surgeons, neurologist, ankle specialist, podiatrist to no avail. I have a bag of expensive AFO’s, knee braces , special shoes, casting of correction and really no answers of the why, except that my knee joints are wore out and this is my life. I worked for 36 years, raised 2 daughters and was self sufficient, now I need help to do a step…..
No surgeons are willing to do any knee replacements or part/piece, they said it’s too risky and it may not help because I’ll still have same muscle strength and function as current. I really having a rough time wrapping my head around this as how can my muscles that I used go from 10 to zero. I know I compensated muscles for ones that never returned? I know that my gait has been very determental in general. I never saw neurologist, 1st time was 2014. I then could get up off floor without using my hands, now I have trouble even using my hands!
I do have restless legs and without medication, it is unbearable. I know I should make peace with what I have, it’s just unbelievable how fast it changed.
I am interested in whatever you find on the trickle down the leg cause. What is a rolltor? I use cane daily. I have no other symptoms you spoke of other than the strange sensation water. I will see doctor to discuss my EMG in 2 weeks. I’ll let you know if I find out anything new and useful and post to the site. Sorry for the book, and take care!April 7, 2018 at 2:49 pm #114076
Just an update from those who were following this post.
The University Neurologist basically told me that I had permanent, residual damage from the GBS. He believed that, because my strength was good, that I could “forget about GBS”. Needless to say I was frustrated.
I take Gabapentin 2x a day, walk with forearm crutches now, have neuropathy, issues walking, can’t go up stairs much. GBS affects every part of my body, from my bladder to my blood pressure and heart rate.
My primary care doctor is very educated and has basically suggested that GBS is affecting me now. I have done my own research and have found articles about “post GBS”, similar to “post polio syndrome” and feel that is what I am experiencing. I also read that folks with GBS do not recover from fatigue the same way that others do. There are two articles I am speaking of. I will link them at the bottom of this post.
I am suffering from dysfunction of the autonomic system now as well, which was controlled by a medication (originally I was told this was anxiety). I have to now take it only 1x a day because it was causing my blood pressure to drop while switching positions. So, now my heart races a lot and is all over the place, causing me to be dizzy, lightheaded, etc. I am seeing a Cardiologist on the 24th of April.
My urologist is having trouble controlling my incontinence, and suggested a few things for me that are invasive. One of them that sounds promising, is basically a pace maker for the bladder that is surgically inserted near the back. However, I would not be able to have MRIs with this, which is troublesome. I am still deciding what to do.
As far as the physical side goes, I am in Physical Therapy 2x a week. My PT is pushing me a bit farther than I would I like. The bike she has me pedaling on causes neuropathy in my feet, and I have told her that. It was really getting bad on Thursday, and she told me to just “pedal through it”. I have never experienced such pain and ended up crying after getting off the bike. I do not want my sessions to be like this, so I think I am going to have a talk with her.
I started walking with forearm crutches, and it uses a lot of muscles that I am not used to. It is very difficult but I hope I get used to it. Walking is really hard and I don’t really leave the house except for appointments and with my room mates. I am very much in pain a lot when I walk. I wonder what will be the resolution.
I hope that everyone here is doing well and thank you for reading this post.
Here are the links to the articles referencing post GBS and fatigue in GBS:
Fatigue in GBS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824125/
Good luck everyone!April 8, 2018 at 12:40 pm #114077
Thanks for keeping us posted on your latest developments. So sorry to hear about your condition at 29 years old. When I read about your status, I feel very fortunate that I was able to recover from GBS (complete paralysis) with only foot drop in both feet. I hope you will get better over time with the PT and crutches.
I also want to thank you for providing those links at the bottom of your note. With some searching, I was able to find a book that is available on the web (free for downloading) celebrating 100 years of progress on GBS:
http://eprints.gla.ac.uk/136380/1/136380.pdf – lots of interesting & useful information – especially for someone like me who got GBS in 1972!
And on a similar note, there are Youtube stories of people who have had GBS recently. What is interesting for me is that we had no cameras documenting my GBS. But now with cell phones, family members can document the entire GBS story. Of course, these are selective samples – not representative of the GBS population. Nevertheless, I was able to “relive” my story through other people’s stories and actually see what was done to me (e.g., tracheotomy) through this “new” technology. I have only looked at a few – here is one story: https://www.youtube.com/watch?v=VWvrHhs2jps
Let’s hope for a good year for you.February 6, 2019 at 5:32 am #116270
Hey all, just another update! [Almost a year later!]
I am still here and lurking, just haven’t posed much. I would say, in a sense, things have progressed for me. I started using a power wheelchair maybe two months after I posted about 10 months ago. After the forearm crutches required too much strength to use, and caused a ton of pain, the old PT I worked with and I sat down and made the decision to move forward with a power wheelchair for outside of the home. [Where I live is not wheelchair accessible]
I now have a beautiful Quantum Edge 2.0 from the Muscular Dystrophy Association. I am blessed to have this, and it gives me so much independence and freedom.
I became a Certified Peer Specialist [person with lived experience who can assist others in their journeys of recovery] and Community Health Worker in November 2018. I used my old power wheelchair to get to class. I used my old rollator [a walker with a seat] for graduation. I begin a career as a Certified Peer Specialist at a local disabilities organization in March. We work with people who are wheelchair users, like myself, and I am becoming a part of a new program who aims to help those who also have mental health struggles–bridging the gap between medical and mental health. It is truly groundbreaking.
My life is going the way I want it. I have mostly accepted that I am now disabled, though, that does not stop me from searching for concrete answers about what is going on with my physical health. I have my first EMG in about 10 months today. I am curious to see what it shows. I have specialists, upon specialists, upon specialists. I have been diagnosed with POTS [Postural Orthosthotic Tachycardia Syndrome] and receive saline infusions through a PICC line daily. They help, mostly because I have IBS as well and I do not absorb things, like fluids orally, very well.
As far as my urinary incontinence–I do not have many answers. I am going to be starting pelvic floor physical therapy in the upcoming months. I am hoping this helps. Because I am a trans man who was assigned female at birth, this is the best method, my urologist says. I also hope to get clearance to have lower surgery [genital] past 2020. I am hoping this pelvic floor physical therapy resolves my issues so I can move forward.
I also see a rheumatologist, who a few days ago, ran a ton of blood work. He is very thorough and told me that I will most likely test positive for my whole life on ANA and SSA tests due to my bout with GBS. I thought that was interesting. He said that, at any time, I could get GBS or another autoimmune disease. He feels that my symptoms and troubles are mostly related to past GBS and the nerve damage associated with that.
I am also looking into neurologists who specialize in Small Fiber Neuropathy, which is common in those who have POTS. I have recommendations from my cardiologist, who is amazing.
If anyone ever needs any support, has questions about what I have gone through, etc, feel free to reach out. I go to mental health therapy 1x a week to process all that is happening in my physical health life. It is a lot to take in. This disease is truly a mystery. I never thought it would be with me for my whole life.
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