some more questions

Hi Karen

I don’t know when your Mum encountered GBS. I had pins and needles – or more accurately, zips and zings – after leaving hospital. I understood that they were happening as my nerves regrew their myelin and I took it as a good sign (once I learned about it and stopped panicing).

I can understand weak knees but wonder if it is also weak legs generally? I personally did not notice my knees so much as the effort it took to make my feet move, and then to move where I would like them to go. Naturally my knees were involved but I mostly noticed the effort in my thighs and calves.

It occurs to me that, when you lock your knees, you are relying on some major muscles to keep you upright and, whilst they are weak you are going to feel your knees trying to take up the slack.

Having practically weak anything whilst getting better from GBS is I suspect fairly common.

My absolute best wishes to your Mum. She has come through a strange, strange time and is now a member of a rare and exclusive club. And I wouldn’t mind betting that you have been through the mill too.

God bless

hi karen. i am 5 years post gbs and still have pins & needles. i’m asleep from the nose down and left hand and both knees were left partially paralyzed. so in answer to your question, yes, it’s normal for pins and needles and weakness in the knees. i walk with a cane and use a wheelchair for long distances. i’ve learned to live with it and i have adapted my life very well to it. that DOES NOT mean that your mother will be left with this. i was not properly diagnosed at first, so i didn’t get the proper treatment until quite a bit of time had passed. i know you’ll be reading this to your mother, so; (mom, don’t get discouraged. keep fighting, have a positive attitude and you WILL slowly improve). so karen, i hope this was a little helpful to you and your mother. you’re both in my prayers.
deb

Hi Karen,

Just wanted to send your mother best wishes since she will be reading this! I hope she gets better really soon!

Love,

Shannon

Hi!

As far as my experience goes, I definitely continued to have pins and needles, although to a lesser degree – and I have had them on and off since I have been treated, although it has gotten a little better (not on my legs and ankles anymore, just hands and feet).

I definitely had issues with my knees for a good month or so after I was treated. When I walked, my knee would often not stay locked, and would pop out as I put weight on that leg. It was unsettling because the unstable knee made my walking a lot less secure. I was always afraid I would just drop to the ground! :rolleyes:

This resolved itself gradually over a month or two. Good luck to your mom!!

I’m not sure about the “pins and needles feeling” But my guess is that it’s a sign of improvement. Kind of like when your foot falls asleep. I think that because her nervous system has been attacked and if the attack has stopped, she would start regaining feeling. Maybe others on this forum could
give a second opinion on this thought?
Tell your mom hi for me!

Karen,

Yes, I understand what your mother means about “weak knees”. I also had this for quite awhile (+-2yrs) post GBS, and occasionally still have the feeling.
I never entirely lost the ability to walk, but needed support at times. I am able to walk now, and get better every day.

The pins and needles sensation is also familiar. I had numb patches on my skin in various areas that still are somewhat numb. These areas are gradually getting better too, but the pins and needles are more pronounced when I am tired.

Best wishes to your mother.

Suzanne

[QUOTE=concerndaugher]My mother, who does not have access to the internet at this time, has asked if others continue to have the “pins and needles” feeling in their feet and legs. She also asked if having weak knees is common. Although my mother is walking with a walker and assistance from two therapists, she has trouble locking her knees and will need braces for support.

please let her know.

Thank you. I print these off and send them to her.

Karen[/QUOTE]

Karen,

‘Pins and needles’ will be there until the nerves are healed. Now, when they will be healed is a totally different story. Nuerontin works well, when taking the correct dosage, for this. I also used something called “Ellamax”, I think, it is a lidocaine cream that worked well during the worse part.

Weak knees is not uncommon either but I would also pay attention to the ankles. I don’t know how many times I twisted my ankles because I couldn’t tell the placement of them. I used braces on them (ankles) until I gained full control.

It is wonderful that she is already up and walking, even if it is with assistance. The first step is always the hardest! It will get easier!!!

Angela

PS. What is your mother’s name? Sorry if I missed it in another post.

Hi Karen-exactly 2 years ago Jan15 I started IVIG…was essentially paralysed from the hips down and in a lot of pain in the back and thighs. Feet felt like I was standing in a bucket of wet coarse beach sand and felt cold, although they weren’t. After IVIG, improvement started and I was soon walking with a walker (3 weeks) and I recall a bad part of the walking part was the inablity of the ‘behind the knees’ area to support my weight…the legs wanted to buckle due to this.It took several months for the frequent zings or tingles to subside and for the fatigue to fade. Now, two years out, the fatigue is rare but the zings come back a bit anytime . It is not scary. What is scary is the numbness in the hands which happens from time to time but only when it feels like the same kind which occurred after I started having difficulty walking and had all the back pain. Now this hand numbness from GBS cost me control of my hands and weakened my upper body strength. By the time the hands got bad, I lost the ability to walk….ascending paralysis….the damage was even worse further down. I hope your Mum has the following success as I had—-
There is hope for your Mum and all others:two years out I can do everything I did before, and more but have to watch the sense of balance when fatigued and live with any tingles.
The knee reflexes also came back after about 1 1/2 years…good luck….Ray

Hi Karen and Mom! You have probably already realized that there is no time-table or sequence of healing that applys to everyone. There are just to many variables 🙁 The most important thing to remember is that Mom will continue to improve. This is where a “diary” really helps ’cause you can read back and “see” the changes. I am a firm believer in good nutrition and an “I’ll never give up” attitude (we depend on our Caregivers for help with that ~ ha!) Pins & needles ~ I still get those when I “over do”! It’s always scary ’cause you wonder “am I gonna relapse?” but rest, lots of it, is the Rx. Just refer to all of Gene’s posts 😉