Hi Everyone, I was wondering if anyone has their mouth numb. Its very hard for me to taste and I think I can get it back by going to an acupuncturist but ins. does not cover it so that will have to wait. Does anyone have any ideas? Also, I have the Miller-Fisher variant of GBS. Basically it started at my head and went down. my head is numb somewhat. I had spinal fusion surgery in Oct of 2013 because the epidurals weren't working anymore, so im slowly trying to get stronger. I am a very strong woman and cab handl a lot. what I cant do without is friends. Im so glad im here and thank you to everyone for the warm welcome. Ive had this now for almost ten years. I know it better than a lot of medical professionals as im sure you well know. I make jewelry in my spare time that gives me great joy. I also went and got two tattoos. one on my forearm says strength for when im throwing up and laying on the floor since part of my stomach is still partially paralyzed. It helps so much. Please those of you who are just in the baby steps GBS, know this. YOU ARE NOT ALONE. WE ARE HERE FOR YOU. I DONT EVER WANT PEOPLE TO FEEL ALONE WITH THIS. PLEASE, if you need a friend or just someone to listen , I am here anytime.I don't know if I can give my email out, if I cab I will do that. Hang in there, I always say on my bad days . Pain days or puking, or whatever the day holds. If its a bad day, know that tomorrow is another new day. I was a preschool teacher for 9 yrs and I worked in a hosp. for 7. I love talking to people and helping. I like being part of a team. Enough rambling for now, or this may be a short story. lol. Thank you for making me feel so welcomed. And if any ideas on getting my taste back would be greatly appreciated . Have a great day everyone...Mallory
The left side of my face is partially paralyzed and numb. (Besides the usual hands and feet.) Feeling never came back all the way. It doesn't affect my taste, but I can see how it could.
You have a really positive attitude! Thanks for your posting!
LanceB
God bless you Mallory for your courage & determination. I have very mild GBS, but I had tingling in my face early on and nothing seemed to taste right. I also have a cervical fusion, but years before (1992) GBS. I am also having some nausea. I didn't know what it was from. I still have tingling in my face and mouth, but not as pronounced. My sense of taste seems to be okay now. Right now I think I have occipital neuralgia-- headaches, scalp tenderness in the back of my head, sensitivity to light and eye pain. I don't know if this was brought on by the GBS. I think somehow they are related. I had an MRI today of my neck. I was quite shaky afterward. It seemed to jar my whole nervous system.
Have you ever seen an ear, nose and throat specialist for this? Perhaps, that specialist would help and insurance should pay. How is your sense of smell? Taste and smell are closely related. I wish you good luck and a resolution to this problem. Take care.
Hi, I’d love to have someone to talk to. I don’t see a problem giving you my e-mail.
Well, Mallory I don't know exactly how to answer your question now that you say you have had this for 10 years. I have GBS and mine started from the feet and went up. It affected my taste buds and I lost my sense of taste for some time. Nothing tasted right and I did not want to eat. This was a good thing for me since I am a very large (let's just say fat!) woman. I initially lost 30 lbs. and that was the only good thing I could see about having GBS. I could not feed myself, put my partial in or out or brush my teeth at first. After a couple of months or so, my taste began to come back and my appetite returned with a venegance. Think I tried to make up for all the meals I didn't eat. Sorry to say that I have gained all my weight back and then some. Trying to lose some now and can't seem to. Glad to have my taste buds back, just wish I didn't like food so much. Glad to have you with us on this website. I was so glad to find it, but wish it was easier to manuver around like the "Inspire" site for ostomates. I also have a colostomy that I got in the middle of GBS recovery. Can we really ever say we have recovered? I am so much better than I was, but seem to be on a plateau and don't know if I will ever be any better. Just thankful for the progress that I have made so far.
Hugs & Blessings,
Kay
Rosemarie kaupp said:
God bless you Mallory for your courage & determination. I have very mild GBS, but I had tingling in my face early on and nothing seemed to taste right. I also have a cervical fusion, but years before (1992) GBS. I am also having some nausea. I didn't know what it was from. I still have tingling in my face and mouth, but not as pronounced. My sense of taste seems to be okay now. Right now I think I have occipital neuralgia-- headaches, scalp tenderness in the back of my head, sensitivity to light and eye pain. I don't know if this was brought on by the GBS. I think somehow they are related. I had an MRI today of my neck. I was quite shaky afterward. It seemed to jar my whole nervous system.
Have you ever seen an ear, nose and throat specialist for this? Perhaps, that specialist would help and insurance should pay. How is your sense of smell? Taste and smell are closely related. I wish you good luck and a resolution to this problem. Take care.
mallory said:
Rosemarie kaupp said:God bless you Mallory for your courage & determination. I have very mild GBS, but I had tingling in my face early on and nothing seemed to taste right. I also have a cervical fusion, but years before (1992) GBS. I am also having some nausea. I didn't know what it was from. I still have tingling in my face and mouth, but not as pronounced. My sense of taste seems to be okay now. Right now I think I have occipital neuralgia-- headaches, scalp tenderness in the back of my head, sensitivity to light and eye pain. I don't know if this was brought on by the GBS. I think somehow they are related. I had an MRI today of my neck. I was quite shaky afterward. It seemed to jar my whole nervous system.
Have you ever seen an ear, nose and throat specialist for this? Perhaps, that specialist would help and insurance should pay. How is your sense of smell? Taste and smell are closely related. I wish you good luck and a resolution to this problem. Take care.
mallory said:
Saving…
im trying to reply to rosemarie but I cant so ill have to figure it out when I get home, sorry rosemarie. Mallory
Saving…
Hi, sure I would love a new friend. I need all I can get. do you not have a lot of support? Let me know. Mallory
Gbsguy said:
Hi, I'd love to have someone to talk to. I don't see a problem giving you my e-mail.
I’d love to talk with someone that is going through what we are. I do have limited support from friends and family but I don’t think they really understand. E-mail me if you’d like.
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Hi Mallory,
I am here for you anytime. I am sorry you were unable to reply back. I had trouble with this the other day then the next day it straightened out. I do have the support of neighbors, family and friends, but when you are independent, it is hard to ask for help. I am trying to be as active as possible and get out as much as I can. Lately, I have been having a lot of tests-- breathing, EMG, MRI. I think my shortness of breath is related to all the issues with degenerated and bulging discs and bone spurs in my neck. My breathing test today indicated that I do not have asthma. The shortness of breath and some of my neurologic symptoms may overlap between my neck and GBS. I have an excellent orthopedic surgeon. When I see him, he will have answers for me, I am sure. He only specializes in spines. He sees a lot. My main issues are shortness of breath, headaches and fatigue.
Enough about me. How have you been doing the last few days? I hope you have been having more good days than bad. It can be hard to be strong and positive all the time. That is why this site is so important. How do you deal with the fatigue and general feeling of weakness and shakiness? I would be interested in knowing what you and others do. Have a good night and let's hope we can be in touch
Rosemarie