azgold
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February 17, 2015 at 8:44 pm
Jim, thank-you for responding in this thread. The fact that you are still improving after seven years gives me much hope! I found it just too hard to believe that I am going to be stuck like this the rest of my life. I’m going to keep working at it and wish you the best recovery as well. 🙂
February 12, 2015 at 11:44 pmMatt, you are hilarious! 🙂
February 12, 2015 at 11:40 pmJust passed the three year mark and still have some lingering paralysis on the right of my face. I can close the eye now and things are greatly improved but definitely not normal. Not the feel, look or function. Still, VERY SLOWLY, it has improved. In fact, I occasionally have people remark that it’s looking better and I hadn’t noticed.
What I have done to date: facial exercises given to me in the rehab hospital; Bell’s Palsy exercises; exercises of my own devise; massage; trying to manipulate the right side of my face to match up with the left in front of a mirror; applied heat.
How much my efforts or just plain time and healing affected my improvements, I can’t say.
Re going out in public, I know from experience that you don’t want anyone to see you like that. I’ve gotten to the point that I don’t care now and people don’t show any negative reaction.
I’ve practiced in front of a mirror to form a smile that camouflages the ‘bad’ side of my mouth and my eye that doesn’t open fully. You might try that. Practice until you can do it without looking, so you know how it feels when you do it right. I have either numbness or no feeling on the right side but I can feel where the muscles bunch up. If you can’t get one side of your mouth to curl, perhaps a sexy crooked grin would work for you. Worth a try.
February 12, 2015 at 11:19 pmActually…I hadn’t even considered psychotherapy. I did refuse to take anti-depressants in the hospital. All part of my ‘I hate taking pills!’ mentality.
I recently passed my three year anniversary. Dreaded its approach because of being told that I’d never get any better after that. But now that it’s past, I still find myself unable to believe that I will be stuck like this for the rest of my life. Is that a driving/motivating factor to continue my slow progress forward, or merely denial? I figure there’s only one way to find out.
Truly, I don’t feel depressed, although I do get tired and frustrated with the seemingly endless plateaus. Did you feel that way prior to depression setting in? Can a person be depressed without realizing it? That’s a serious question because I don’t know.
I understand what you’re saying about accepting our disability but I’ve thought about it after reading your post and if it turns out that I do not improve any more than I have, I can live with it. I’m one of the lucky ones who got a lot of the way back, even if it isn’t 100%.
Still just wish I had normal feeling and function back in the right side of my face, though.
February 12, 2015 at 10:44 pmGeez Matt, tell us how you really feel. 🙂
I do understand, it’s gotten awfully quiet here.
Nice fish, by the way!
February 12, 2015 at 10:38 pmI weened myself off Lyrica/gabapentin, endured a rough first couple of days and didn’t take anything to replace it. Kept using the Voltaren (not on my face of course) and when necessary, popped a couple of Tylenol or ibuprofen. I did this ten months after getting GBS because my goal was to get myself off everything. I hate taking pills, plus I’m stubborn. 🙂
My CCAC occupational therapist told me to briskly rub the affected area(s), or expose them to different textures/temps, etc. That was supposed to stimulate and condition the nerves somehow. I can’t say how much it helped, as I worked hard at returning to ‘normal’ at the same time over the past three years. But hey, as my mother used to say…can’t hurt, might help.
A registered massage therapist told me to apply heat to my face (one of my lingering problem areas) but that didn’t help at all.
I picked up a tip here in this forum that Alpha Lipoic Acid was helpful for the nerve damage but it didn’t work for me, just upset my stomach, unfortunately.
Sorry, Hedley, I know that’s not exactly what you asked, just wanted to give you a different perspective.
February 12, 2015 at 10:13 pmOne of the reasons I have not been here much lately is because of the red warning screen I got for the longest time when I tried to login. My anti-virus warned me that it was dangerous. Eventually, I quit trying and forgot about checking in here. Still hasn’t become a habit again.
November 28, 2014 at 9:02 pmI will be three years at the end of January 2015 and I still have some residual paralysis and weakness on one side, as well as occasional muscle spasms and nerve and eye pain.
November 28, 2014 at 9:00 pmRobert, that may prove difficult as she said that her sister is on a feeding tube and has just had her colon removed.
November 28, 2014 at 8:58 pmHave you had the leg and knee pain all along, Shirley? Or it has started again after not hurting for some time?
I do still get leg and knee pain sometimes but typically after engaging in a new activity or using stairs.
November 28, 2014 at 8:56 pmWhen I was first diagnosed, the doctor told me that stress contributed to my getting GBS. I was also warned (strongly) to avoid all stress while recovering.
That’s a bit a tricky. 🙂
November 28, 2014 at 8:54 pmI am so sorry you and your partner are going through this!
As GH asked…did they give your partner a spinal tap? (Lumbar puncture?) That is the only way to confirm GBS.
I’ve never heard of organ failure with this condition but I guess if he has a severe enough case, almost anything could happen.
The doctors have their jobs cut out for them. GBS is not easily diagnosed and definitely isn’t the first thing they think of, so trying to figure out if there is something else going on as well, that could take them some time.
My heart and prayers go out to you and your partner. I hope all improves and goes well.
November 28, 2014 at 8:45 pmMy memory was horrible for a while. Much of the time, I couldn’t even remember simple words or what some things were called. It’s much improved now but it still isn’t back to where it was and I took myself off all meds two years ago, so it isn’t med related memory issues.
I think the explanation may be fairly simple. When GBS hits and destroys the myelin, it cuts off communication between the body and the brain. Hence the paralysis. Nerve regeneration only happens at an average rate of 1″ per month, so if you had a severe case, it can take a long time to get fully ‘hooked up’ again. And of course, there’s always a chance that some things aren’t going to reconnect, or not in the same way. That’s just my personal theory, though. I’ve nothing to back that up, really. Doctors told me that GBS doesn’t effect the brain. Well not directly but it certainly does effect the nerves going to it.
In MACKAY1’s case though, it’s been 18 years, plus s/he is still taking meds, so it certainly wouldn’t hurt to look at what the Neurontin might be doing to him/her. In an effort to feel better and clearer, it’s probably worth at least looking into.
November 28, 2014 at 8:32 pmOh yes, had that. It almost drove me crazy trying to stretch out my legs, feet, back and torso. Good news is that in the past nine (or so) months, that has eased considerably. It is very much milder now and sometimes is so mild that it’s just enough to register in my brain that it’s happening. Rarely acts up to the point where I have to stretch anymore.
Still get occasional muscle spasms, mostly in my hands, though.
November 28, 2014 at 8:27 pmThis is the first time that I’ve been able to login in months! I kept getting the red screen warning me of malicious behaviour.
