AnonymousFebruary 24, 2010 at 9:08 pm
Me again! Thanks for all the advice on the other thread. We have had a good day today – a walk to the mailbox (took 20 minutes, but who is counting?) and some video games with the girls.
Anyway – I have heard others mention frequent urination, etc due to loss of muscle control, but hubby has no feeling in the waist and groin area. He was put on Flomax to keep the bladder empty, because they noticed in the hospital that it would not empty and stool softeners for the other end! He says it feels like he is sitting on a pillow and this numbness NEVER varies. The numbness in the legs and feet will wax and wane, but never higher than his thighs. For people after IVIG and hopefully on the road to recovery, what does this mean that this area never gets any feeling or tingling back?
Also – does it seem to be common that numbness and heaviness seems to settle in more at night rather than during the day?
Any comments are appreciated! Thanks
AnonymousFebruary 24, 2010 at 10:12 pm
I have found that as the day goes on the more numbness increases and returns. As I do too much at any one time three things happen, my face gets numb, then my hands and lastly my feet. so when I start feeling my face go I look for a chair. I also had a numb butt but it is better now, just a little cracked. Great trip to the mailbox today, one of lifes little joys.
AnonymousFebruary 25, 2010 at 9:18 am
That is great progress. How many times did we time the little things we did before GBS, I know I never did. It helps to show improvement we have made along this journey with GBS. If I am on my feet to much during the day the numbness in the feet and heaviness in legs is worse in the evenings.
Since Your husband is recent with his GBS, he may have less numbness as he improves over time. I have less numbness in the butt and groin area now than two years ago,
(I can feel that pat on the rear from hubby now) :D.
Happy daddy time for the girls playing video games with dad.
Hope he keeps improving.
AnonymousFebruary 25, 2010 at 11:18 am
At one point, I had a numb tongue…the doctor did not believe me! The tongue is a muscle too and I would actually get tongue twitches, which was a really bizarre feeling! My symptoms flare up at night. I don’t have much numbness during the day, but that is a different story at night. It is typical for neuropathy to get worse at night. My doc had told me to take gabapentin at nighttime to help with this.
AnonymousFebruary 25, 2010 at 3:22 pm
Hi Lost Wife:
It is strange when you are on the toilet, and can’t feel the seat!
I didn’t catch how long ago your husband had/has gbs…. Once the healing begins the numbness should go away (In many areas of your body, although some weakness/numbness may never go away?), although it will be gradual.. Also, the healing occurs in reverse order of how the damage occured I think… I had severe constipation, and all that good stuff as well.. Stool softeners helped… I think I had weekness/numbness for a few months.. This included the sexual type stuff took some weeks but things start working again….
JessicaH.. I had the numb tongue as well, and doctors same thing would not believe… Things tasted metal like…
Good luck on recovery…. Deanop
AnonymousMarch 18, 2010 at 12:29 am
My tongue was numb for about a week when I bottomed out then started getting better. I am in recovery now for about two months and I also get exhausted and weak by the end of a busy day and my tongue and nose/face will tingle. My face sometimes has the sensation of being covered with spider webs. I wish you and yours a speedy and full recovery.
AnonymousMarch 18, 2010 at 2:41 am
I am about 4 years and 5 months from my onset. This post reminds me of how much improvement I have actually had. I forget about things when they are not bothering me. I recommend keeping a Journal and going back a month or every few months and seeing the very small, slow signs of progress we all actually are making. The sheath of the nerves repair at a very slow rate. I really did not know or understand what [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly really meant. Now, reading my Journal and looking back this post really has reminded me of the metal taste in my mouth and the double vision for 10 weeks. Frequent visits to the Neuro-opthamologist for vision problems. Also, the joy I felt the first time he said come back in a year! I remember just the way visits to the Doctor appointments used to wear me out. Oh I don’t even want to discuss how long I had to sleep after coming home from rehab visits for PT and OT. I still can not get over how deep a sleep I go into when just taking a nap. I don’t hear the door bell or the telephone and they are both right next to me! I was never like that before. I remember trying to explain to the nurses in the hospital thos first few days that when I drink cold or warm things that the roof of my mouth gets needles and pins and feels like it is falling asleep. Then the same with the tongue and then loosing the ability to swallow. Then they started to pay attention to me and take me serious. Not too often now but last few years I have had the terrible cramps in my tongue. Talk about panic when you can not breath or talk and then you calm down and remember to relax and breath thru your nose! To me it feels like I was going into a seizure, but that is not the case it is a spasm of the tongue. Yep what a weird problem to not be able to feel your butt and that area. Then thinking you are sitting on a ball and going to wobble off. Meanwhilel you are not even tilted to the left or right. Then in the shower testing with the water to feel where I am still numb and little tiny spots on my body that are still numb to this day. Might be a circle as big as a quarter or an egg on the front of the leg. Or a patch as big as a slice of bread on my hip. The tip of a finger or my forehead or chin when I get tired. The list is so long and my playing attention to my body has be raised to such high sensetivity levels. Sound effecting things and causing me to freeze or shake. The most annoying is the vibrating or chilling sensation. Also, the burning that either feels like pain from frost bite or from heat that I want to pull away from. The constant cramping still grabs my attention! The weakness when walking into the wind that just drains my energy! I can go on and on but one thing foresure is it is happening and it is not in our heads. If that happens and your Doctor is not listening then go to a Doctor that does understand. Being able to tell someone what you fell like is very hard. Finding the right words to describe what it feels like can be misleading. You can also be considered a complainer! Well keep that Journal and then you have a point of reference to see your progress! Reading the message boards has helped me come up with words that discribe things better. Most frustrating is when you start to recover people think you are better they don’t see the things that go on inside your body. Just keep telling yourself it does get better slowly! I tend to see big improvements over Summer. I can do more this Summer than last Summer. Major break thru improvements! I can not wait to reaccess my situation after this Summer! I know everyone looks forward to Summer but for me it is just more than warm weather and vacations and picnics. 😀
March 9, 2018 at 4:38 pm
I have done hundreds of searches, and this is the only posting that deals with what I am experiencing. Constant “wedgie” feeling, spasming tension on back of buttocks, up right torso and down inner thighs – as if I’m wearing a thick sanitary pad. Definite feeling of being off-balance when sitting or lying down. I’m exactly four months out from my GBS diagnosis. Hoping to feel some improvement soon. Can anyone give me some hope?
March 9, 2018 at 4:41 pm
Wanted to clarify the above post: feeling (or lack thereof) is not permanent, except for the wedgie effect. Other things – spasming and sanitary pad feeling between legs seem sporadic and much worse at night.
March 10, 2018 at 10:46 am
GBSer, there is always reason to have hope. It is difficult, I know, when you’re faced with persistent and nagging symptoms. It can be downright debilitating and gradually drain away your resolve to maintain a positive attitude during recovery. I was told that during recovery I would face depression and thought to myself, no biggie. But turns out it’s not so easy. I’ve never suffered from emotional instability or mental illness but am teetering on the edge now and can certainly better sympathize with those who have tried to explain their emotional suffering to me before. My latest challenge is with anxiety – also something I’ve never had to deal with before. I wake up anxious, have tremors and twitches especially in my mouth, jaw, and fingers, and that makes me more anxious, which in turn exasperates the symptoms. Soon enough I turn into a basket case. So whether or not you find someone with exactly the same symptoms as you, have heart because we’re all suffering in similar fashion and all have reason to hope for better days ahead. Whether that means the symptoms abate or we just adapt, either would be okay with me at this point!
March 15, 2018 at 4:31 pm
Thanks, Gary, for the words of encouragement. However, I’m only asking about these specific symptoms because I’m unsure the GBS diagnosis is correct. Both my neurologist and the GBS medical advisory panel seem to wonder if the “numb butt” symptoms are caused by something else. My neurologist feels maybe my GBS diagnosis was incorrect (made originally by another neurologist in her practice), but she has no other theories to offer. So I’m panicking that I should be doing something different and might be missing a window of treatment.
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