Hi…I was diagnosed in October with GBS. Had the flu end of December my symptoms have progressively gotten worse with new symptoms of no bowel sensation. I was admitted to hospital again January 4th. I have had 4 more MRI’s and another lumbar puncture I am now getting another 5 day round of IVIG. The reason for my initial GBS diagnosis was a GI infection. On top of the no bowel, urinary sensation severe weakness and numbness all over and blood pressure fluctuations high to low. I have had only one treatment so far but my body feels like they are not just numb but im getting hard to move very heavy, my neurologist said it will take a few days to see any improvement. He did not come out and say it’s now CIDP but voiced the concern. I just can’t believe this has now happen what positive outlook I had has now been dashed.
Any advice would be greatly appreciated.
Thank you Dawn
Dawn - even if you have CIDP, it can be treated, and you CAN recover. I’m a year into GBS/CIDP, and it’s happening for me only as of late. Don’t lose the positive outlook, you will prevail!
Dawn, GBS is an auto-immune disease which means your immune system is screwed up and confused. Over time it apparently gets straightened out.but as we heal, any viral infection can give us problems. Don’t get discouraged. I have had two attacks and am not yet bac to the level of health that I was before the second attack, but I am improving day by day and know I will beat this thing, and I am 73. You sound younger so have better prospects. Stay positive, and by all means avoid any contact with anyone who is sick. Eat as well as you can, and stay positive, it is the best medicine.
Dawn, I am with a patient three days a week and I know that it is so hard to stay positive. However, the small improvements, even when there are setbacks account for something. Keep your chin up and try to renew your courage to feel inside that you are going to beat this, you are going to heal. I hope that you will see some improvement daily. Look for the smallest of improvements. Take courage, dear person.
Dawn -- My initial diagnosis of GBS came about 2 months after a very bad chest cold which was cured by a zpac. It took 3 weeks of doctor visits and tests while my condition went from numb feet - to not beng able to keep my balance -- to falling -- and finally to partial paralysis. At that point I was admitted to a hospital for further evaluation. After a spinal tap and a full body emg I was finally given a diagnosis. My treatment included physiscal therapy and B12 shots. I was given a 5 day course of IVIG and then sent home after spending 6 weeks in the hospital. I then had 6 weeks of home therapy, 6 weeks of outpatient therapy, and finally 6 weeks of self-directed therapy.
I then returned to work. It is now 3 years later and I still have numb feet and hands and often feel fatigued. My neruro says I now have CIDP and will most likely have to take neurontin every 6 hours for the rest of my life.
I am almost 76 years old and still consider myself capable of most things that are on my rather lengthy wish list. I want to travel to Ireland, Paris, Greece, New Zealand, and Australia. Since I will soon be a retired Airline employee with lifetime flight benefits - that will be possible. I move a little slower and use a cane - but I get there.
Just keep moving each and every day - do not let this syndrome defeat you. We all get small setbacks - just dust yourself off and keep on trucking.
Dawn,
4 months is very early days still, certainly still too early to be thinking CIDP.
I am 1 year in front of you, coming down with GBS in November 13. Even now, every time i get stick (virus, flu, cold, whatever) I get a mini relapse of my symptoms. My legs start burning, the pins and needles set in as does the fatigue. But each time I shift the illness i return to my new normal.
At 4 months I was still in all sorts of trouble with symptoms. It wasn’t until about 8 mo9nths that I noticed any real improvement, and probalby again in January this year (14 months) I felt I’d turned another corner on my way to recovery.
Hang in there and use the forum here, there’s a lot of good people here to tell you their stories, which is often more helpful than the knowledge of the doctors who’ve read it in a text book!
Agreed with all of the posts so far! I think you have a very good chance of pulling through. The problem with GBS is that your immune system is totally out of whack! So a common cold will knock you out for a week or two, not 2-3 days like before. And the FLU!!! Glad you were hospitalized.....it's the safest way to go, Your body just doesn't have the strength to fight off a serious illness like the flu.....before GBS, you'd be miserable for a few days or a week, but you'd each your saltines, drink your gatorade, and move on. But not it's just more serious. No indication of CIPD what so ever (in my non-medical opinion).
I actually was diagnosed right around the same time as you......and some of the things that I've noticed is that colds linger and seem worse. Even little cuts or scabs take longer to heal (I made the mistake of popping a zit on my forehead and still have a nice big red spot that won't heal). The IVIG WILL WORK!! It's no picnic and a frrustrating process, but you WILL get better.
Think how many people die from the flu each year......and you had to battle it with a weakened immune system......so I think you should be giving yourself a big pat on the back!!! You're doing GREAT!!
Friend me if you want to chat more and I'll give you my email address!
Hi Dawn. I had IVIG in hospital but really deteriorated at home. I also had no bowel, urinary sensation severe weakness and numbness all over and blood pressure fluctuations high to low. My neurologist says I have SIDP. This was in Sept/Oct but i am improving. All the above have gone and I am now left with the normal leg pain/fatigue. So don’t worry. It will pass. But I was totally distressed when I deteriorated. I got a second opinion. Lost tons of weight. I am on steroids every morning. I am not sure how useful they are and I do not enjoy the puffiness and lack of sleep. But I am looking to getting back into the gym and just getting my muscles working again But I am worried whether the no bowel or urinary sensation may have done any permanent damage. Has your doctor mentioned anything about that? Matt.
Hi Matt… When admitted this 2 nd time it was two fold the numbness that became to the point of being unable to hold anything the no bowel sensation and severe diarrhea. So the neurologist said this was due to flu 60 after initial diagnosis. But he said no bowel sensation is due to GBS but not diarrhea that you would see constipation. GI Dr. Did Abdominal CT SCAN, and colonoscopy with biopsies and stool samples no reason for the diarrhea. So right now in limbo. I have only been home a few days from this second admission. I will keep you informed… Thank you for your response. Dawn
Thanks Dawn. Let me know how your test results work out. Good luck!
I am so sorry. I was diagnosed in mid-November. Everyone here is right, it is too early. I too notice days when I get tired I get some odd needle sensations and will seem to drag my feet. I work next to a girl that texted me today that she is out with a virus/flu for 3 days. And I just hold my breath. I think it is hard for us because we got the GBS right at the start of the flu season, and the winter bugs time of GI viruses. You are going to be okay.
Hi Nojabold, I am out 8 months right now and just recovered from about a 3 to 4 week bout with a sinus infection. I had some mild relapses of symptoms during this time and still do at times though maybe I focus on them more. I just wanted to know what symptoms have you experienced in your recovery? I am running now and doing the things that I did before this happened to me in June but I am not the same though I am thankful to be so much better. It always scares me that my arms and legs fall asleep so easily and take longer to come around and I get super tired now on days after I run distances that never affected me before. I also have more tingling at times and have never completely stopped with the muscle twitches. I often wonder whether pushing myself with exercise is harmful or good. I don't want to ever jeopardize sending myself back into what I suffered initially or hurting the current state of my nerves/muscle function.
I definitely noticed that this sinus infection set me back more than before but I did recover from it so I think that you have to have patience with illness following GBS and take it easier. I know that time has helped me but I find myself even now continuing to want to understand more about this whole thing. Good luck to all especially through this flu season!
Nojabold said:
Dawn,
4 months is very early days still, certainly still too early to be thinking CIDP.
I am 1 year in front of you, coming down with GBS in November 13. Even now, every time i get stick (virus, flu, cold, whatever) I get a mini relapse of my symptoms. My legs start burning, the pins and needles set in as does the fatigue. But each time I shift the illness i return to my new normal.
At 4 months I was still in all sorts of trouble with symptoms. It wasn't until about 8 mo9nths that I noticed any real improvement, and probalby again in January this year (14 months) I felt I'd turned another corner on my way to recovery.
Hang in there and use the forum here, there's a lot of good people here to tell you their stories, which is often more helpful than the knowledge of the doctors who've read it in a text book!