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Living with Polyneuropathy CIDP, GBS, & CMT

Dealing with the fear involved in the GBS journey


#21

I agree - the prognosis for GB is very good. I remember some nurse in the hospital saying to me - don't worry, I will not leave you - or something like that. Well, I did not see her again, I believe. I remember thinking I wish she had not said that to me - but I know she was just giving me reassurance. In the hospital on one of the first nights I was crying - and some lady patient in the room said "Oh, honey, it will be ok". I know I was sobbing not knowing what what happening to me - because I was paralyzed. She was right "things did turn out just fine." I have GBS about 27 years ago.

I have some weakness in my legs (not much strength) but I can dance, walk a lot - so I pretty much attribute that to old age. I have a friend with a truck that is pretty high. I cannot get into that truck very easily. I kind of get on my knee cap and get in that way.


#22

Hi I was on a ventilator I had gbs very sevre was in hospital for 14 and a half months I cannot walk at all I am in a wheelchair for ever. I'm getting a divorce because my ex didn't want me as a disabled wife too look after. We have just sold our family home. With being on a ventilator for so long its left me with a really bad chest. I'm on 3inhalers and a nebulizer. I feel so lonely I live in England.


#23

I am 44, and have recovered full functions. It takes time; it is a very long road.

My thoughts are with those that are burdened with this challenge. I wish you and others continued healing.


#24

Hi. I am at 11 months after GBS with dysautonomia. My neurologist said could have also been Miller Fisher but he wasnt sure. I to have had the muscle twitching and at first they were all over now I can count how many I have in a day but still dot like them. I keep thinking the twitching means I am not healing all the way. Why havrnt they stopped completely and just went away. Has yours now? Did you take anything you think helped you heal all the way?


#25

Hi AngelaFlorida. My neurologist told me that it can be a 2 to 5 year recovery period for GBS. Most recovery for me occurred in the first year but I have found that the twitching has become less and less frequent and fainter with additional years of recovery. The twitching used to get more pronounced to me following more activity and that is still true but it has to be lots of activity. I must not be too bad because I don’t even notice it now unless I sit or lie still and think about it. I believe that I will always be able to tell that I had GBS because I know that it damaged my nerves pretty bad at the time but it doesn’t slow me down too much now. I am cautious about what I push myself to do. I run so I take it all into consideration before I add miles or drop time. But I am still open to trying to challenge myself gradually and watch for any sign of overdoing it now. Those signs have gotten less for me with time. I did not take anything for healing. I really have just listened to my body while I have worked to strengthen my muscles. I still have trouble with the grip strength in my right hand because I can’t open wide sized bottles (I’m a pharmacist) and I never had trouble with this before but I’m going to figure out a way to work on that. You never know how much permanent damage you have but I have been amazed at the ability of my body to recover like it has with time. I bet you will still recover since you are still so early and the twitching will get better. Do you ever experience facial symptoms since they think it was Miller Fisher? They believe I had Miller Fisher too.


#26

What type of dysautonomia did you have? I experienced some of this and I have what was believed to be the Miller Fisher Variant too.


#27

I had gastricporesis, orthistatic hypotension, tachycardia for 4 months lost a lot of weight. I also had few weeks of urine retention lucky it cleared up sooner and anhidrosis for few months but the other gastricporesis and orthistatic hypotension tachycardia lasted the longest. I had blurry vision still do in right eye.


#28

I have facial numbness daily it is my most damaged part. I feel the muscle in my face droop for a few seconds to minutes but it always comes back. I have a small right eye lid droop but not very noticeable to others but to me. I will get numbness mostly in my right side around eye nose bridge and cheek. It is much better since onset but it is the one that is most constant. My legs are on and off. I want to run again and bike but havent been able to keep my lower legs from hurting very bad once I am going for about 5 minutes. I am going to try water therapy see if it helps. I have to exercise.


#29

My facial numbness finally went away. My right eye had been hit the hardest but I can tell it’s damaged. It has never worked the same. I have a delay with turning it but no one else can tell. It’s much better but I can always tell it and it gets worse when I am tired. My vision changed too. I had terrible double and blurred vision but it’s so much better now. And I haven’t had vertigo in a long time. It took lots of specialized physical therapy though but I am thankful for how much it helped. I had a bout of the tachycardia, problems with heat regulation (still trouble if I stay out in the sun), internal pains, and weight loss at the time. My legs eventually stopped hurting so don’t give up on the running and biking, just back off when needed and gradually move forward with it. Water therapy and physical therapy helped me so much! I ran last night after working and my legs are still twitching today but no pain or weakness. I think I’ll always feel that twitching but again it’s very faint. I think it’s damage but it doesn’t slow me down too much. I would not want to push it too much though. I trust my body more now to try new activities but I never forget that I may have limitations. I hope you continue to recover and are able to do more and more!


#31

Just checking on how your doing? Do you still get the twitches sometimes? I am at 16 months have weeks I don’t feel any then feel some here and there but much less. Wish they would stop completely. Let me know how your doing. I finally am cycling again up to 10 miles a day. I may be over doing it though those crawly sensations vame back in my lower legs so starting to take a day or two off a week . The cycling was Do I g everyday.


#32

Hi! It’s so good to hear from you. I am doing great! I do still get the twitches but I don’t really notice them unless I do extra running or a lot of activity. I have some extra time because I am switching jobs right now so I started going to the gym more often. I had been running several miles every other day and lifting weights at the gym the other days and I had started doing zumba a couple times a week too. I liked zumba so much that I added a few more classes a week and then I played tennis one day for a couple hours. Well, I strained a muscle in my leg but I had more twitching in both legs and that same nerve sensation on the outside of the skin of my leg. I actually took a couple of weeks off from running and just did some weights and a little zumba. I’m so much better now and the twitching settled back down where I don’t notice it unless I think about it. I ran today outside with for a few miles and can feel the twitches sporadically now. I really don’t think they will ever completely go away but I’m almost at 4 years out and I think they have continued to get better. That’s great that you are cycling again! I am so thankful for recovery and we are so lucky to get to do so much activity after suffering with this!!


#33

Yoyr like me once you got back to exercises you went full force. I feel better when active. I agree we may twitch the rest of our lives but so glad we can run bike and get around better. It sure was a scary thing but me survived! I will check back with you in a few days or week. Keep going. Happy Easter!


#34

I feel better when I’m active too! I’m not as fast as I was before. How about you? When I try I have trouble but I’ll still keep trying. It was such a scary thing! It was great to have support of people that understood and still is nice because we can still tell we were affected. But so many others have it so much worse. I thought we were too at the time but so lucky! You keep going too! I’ll be at the gym tomorrow! Happy Easter too!


#35

Hope you are well. I am cycling 15 miles a fat and most days dont notice the twitches but recently had one in my thumb that went on and off all day until the next morning. I hate those. It brings me back bad memories.


#36

I meant 15 miles a day not fat