Numb Like Me?
AnonymousAugust 30, 2008 at 9:50 pm
Hi, Everyone … I am new and I am incredibly happy to have found this site. Thank you so much for the benefit of your wisdom and experience.
I am told that mine is a rare form of GBS — sensory neuropathy only — from the waist down and in hands. My Neuro says I am lucky — I can see from some of the posts here that I am. Still, this is a very strange experience.
I have not lost muscle strength and I have no pain — just no feeling on the surface and some joint stiffness in my knees and ankles. My feet are the worst — practically no feeling there. I have been trying to exercise a lot. Balance, coordination, and fine motor skills are only a bit off.
This all started back in April 08. I am improving, albeit s-l-o-w-l-y. Is there anyone else with similar profile who would be willing to share their experience?
AnonymousAugust 31, 2008 at 5:01 am
Hi Mary Beth
I was diagnosed 10 or so years ago with a sensory neuronopathy, after an episode of acute renal failure. It primarily affects my hands, lower legs and feet. I have virtually no feeling in my toes, half of my feet are pretty dead, and my hands have a “stocking glove” type of numbness and pins and needles, which is pretty standard for this sort of thing.
Over the years, things have slowly deteriorated; my balance is pretty shot, various exercises are very difficult, if not impossible, my joints are so stiff and sore in the mornings – I am starting show signs of inflammation, and the neuropathy has slowly moved up my body. To make it worse, my spinal fluid shows no elevated protein, and my EMGs, etc are only mildly off. However, my anti-bodies are all over the show.
My main difference is that my neuropathy is extremely painful. Without medication, I can’t stand to have clothing touch me, much less anything else — it causes a burning that lasts for up to 30 minutes. I take a cocktail of drugs to manage the pain, on a reasonably successful basis.
I have been told that a purely sensory neuropathy is fairly rare. At the end of the day, I have been dx with “CIDP”, because of the fact that I get relapses and remission type periods. I have been on IVIg for abuot 5 years; I get it every four weeks for two days.
There are a couple of us on the site with similar types of symptoms. We are happy to help you out with any info we can give!
Take care and nice to meet you.
AnonymousAugust 31, 2008 at 10:55 am
🙂 Hi! Mary Beth and welcome to our world of GBS/CIDP. This is a wonderful web site, so many supportive people with their life experiences and wisdoms.
I was diag. with GBS 4/07. 1/08 second opinion I was diag. with rare form GBS Acute Sensory Neuronopathy. Now this Neuro told me where ever I am at 18 mo. after orig. diag. is where I will be the rest of my life.
Now I am numb and tingly in my hands & feet. Pain in my joint, knees, ankles, elbows etc. I used to be extremely ticklish on my feet now no feeling in my feet, 😀 I use a rollator to walk, canot walk alone. I am unable to work & on SSD & probably will be the rest of my life.
If you don’t mind me asking how old are you and did you work prior to diag.?
I am an RN & had a very stressful job, day shift manager in a busy emergency room. But I LOVED my job. I miss working so much and I miss my extended family.
So now I take one day at a time. So Mary Beth sounds like we are in the same boat. If you need anything just let me know. You can private message me anytime.
Good Luck & cyber hug to ya!:)
AnonymousAugust 31, 2008 at 12:11 pm
Thanks, Everyone … it makes a big difference to know that you are out there. I really appreciate your support. I am rooting for you too!
I wonder …
Did you get physical therapy? If so, did balance and coordination improve?
Is there anything you have found that has helped with recovery of feeling?
… exercise? massage? B-6 supplement?
Cathy, to answer your question, I am in early fifties. I worked in hard-charging corporate jobs for 30 years and decided to leave that and start a consulting business. GBS started just before my planned launch — wouldn’t you know it. I am trying to push through with my plans, but I can feel diminished capability. I get really tired and it’s almost impossible to stand or walk for long periods. I am in wait and see mode right now.
AnonymousAugust 31, 2008 at 6:41 pm
I am 53. I have had PT several times. Not right now, took the summer off, not really making a difference. It helped alot in the beginning. But I got to a point where nothing was changing. Numbness & tingling was the same. No reflexes, not much balance & unable to walk alone. I never lost my strength, mainly balance & coordination (sp).
I do my stretching exercises every day, I was getting monthly massages, not much difference, & I do take a B-6 complex vit & B-12 Vit. So I guess this is kind of a bummer of a post 🙁 I’m sorry, but this doesn’t mean things like this won’t work for you. We are all different.:)
AnonymousAugust 31, 2008 at 8:00 pm
Thanks very much for sharing, Cathy. I will probably try PT — willing to try anything! It’s all so weird.
I hope you can eke out more improvement before hitting 18 months. That’s an interesting theory and a good marker to know about.
Thanks again for your insights.
AnonymousSeptember 9, 2008 at 7:27 pm
my Internal med doctor uses the word neuropathy all the time my neurologist uses GBS. right now i am in a relapse. my hands and feet have gone numb and there is perm. damage in my legs. I wear artificial foot orthotics(AFO’s) on both legs because of foot drop(had release done) I am very discouraged with my prognosis. i am also having some memory problems. just spent two weeks in the hospital one for gbs related medical issues and the other for gbs related psche issues. just had test done and it is showing perm. damage to my legs(no tests on my hands) looks like the afo’s are perm.glad i can come here and vent. the relapse was caused by the flu i had a couple of weeks ago and now my mom has the flu(she is my primary caregiver).
AnonymousSeptember 10, 2008 at 10:38 am
Hey Jojo. I too have some permanent nerve damage but don’t need AFO’s. It is all part and parcel it seems of GBS. I know it gets depressing, but coming here sure helps. I had GBS 25 years ago and I am coming here because I know people understand how I am feeling emotionally and can relate to my issues and struggles. We are all here fro each other, so keep posting. We are getting through this together. I am so glad you found us!
AnonymousSeptember 10, 2008 at 9:04 pm
How ya doing? We haven’t heard from you in a while. I go to my neuro on Fri. I am going to ask him to repeat my EMG to see if there is any changes since I have been getting IVIg every 3 wks. for several mo. now. I think I feel better, but not much change in my mobility :p
But I have been lacks in my daily exercises 😮
I still just take one day at a time and continue to “get better slowly”
AnonymousSeptember 10, 2008 at 9:13 pm
JoJo, Hey Girl!
How ya doing? As I said above to Mary Beth I continue to take one day at a time, after 17mo. of everyone telling me it just takes time, I can totally understand where your coming from. So many days I feel exactly like you do. I truly believe we would not be human if we didn’t get discouraged & depressed over our condition.
But I also agree this web site has helped me alot. I wish I would seed more success storfies, BUT, thats okay because we can all relate to one another & be supportive. And at times thats what we need.
Keep your chin up & hang in there:)
AnonymousSeptember 11, 2008 at 3:34 pm
Hi, All … haven’t checked-in for a few days. I started PT this week — another GBS-related “first” for me. I don’t expect them to cure my neuropathy, but I can already see that PT will strengthen muscles and joints to improve balance and stability. It’s a nice place and I really like the therapists. However, because the room is usually filled with many more men than women, the TV is permanently set on ESPN. One of these days I am going to be bold and change it to The View. Girl power! LOL
JoJo, thanks for sharing your thoughts and feelings. It sounds like you are being brave and thoughtful as you face each challenge. If you’re like me, you never even heard of GBS until you got it! … so many variables, so much to learn, so much unknown. I plan to visit this web site often. I’ll look forward seeing you here again.
AnonymousSeptember 13, 2008 at 5:05 am
Hi Mary Beth,
I have CIDP, but the sensory part was/is the worse affected. What really helped me was balance classes with a physiotherapist at a day rehabilitation hospital. The course was once a week for an hour or so (depending on how tired I was) and it went for a couple of months.
Before I started the course I had to use my walking stick to help me with my balance when walking and I couldn’t take my eyes off the floor or I would feel like I was going to fall.
The physio, among other things, taught me how to correct myself if I go to fall (I had lost that ability) and how to step over things (which I had trouble doing) – Now even a year and a half later – I still feel the improvements.
It’s hard to explain, but it’s as if my legs had forgotten how to do certain things and had to re-learn these things all over again.
Good luck with your therapy
AnonymousSeptember 13, 2008 at 11:48 am
Hi, Kazza … I will definitely look into this! Thanks so much for the tip. Right now, I am somewhat constrained by my insurance plan (aren’t we all) but it might be worth going outside the plan if necessary. I am just like you — bad on uneven surfaces, always looking down, hard to step over stuff. … gives new meaning to the phrase ‘watch your step’!
Continued good luck to you!
AnonymousSeptember 14, 2008 at 6:26 pm
Like Kazza, I had tremendous trouble with balance, etc. I have been doing Pilates exercises and balance exercises using a ball for about a year and a half now. It has made a huge difference. Pilates focusses on your core, and when that is strong, it helps your posture, but also to make more deliberate moves – to help prevent falling or misstepping.. I also find that using the ball to help with stabilising yourself is really good. My balance has improved alot; like Kazza you have to kind of “remind” your body of what it is supposed to do.
I went to a Physiotherapist (Physical Therapy I think in the US) here who had a Pilates setup. She started me on the really basic things – we basically did a rehab program.
It costs me 10$ each time to use the gym for 30-45min, and I see her to get a new programme when I feel I need one – that depends – every couple of months – that costs abit more.
I bought myself a ball for home so that I could do some exercises there as well.
It has made a big difference for me with the sensory issues. I went through a bad patch and didn’t do any exercises or pilates for about 3 months and I could feel the difference. I still can’t feel my feet….but you can’t have everything!
Take care and I hope that things start to improve soon.
AnonymousSeptember 14, 2008 at 7:22 pm
I am glad that you have found this site and a place to “talk” with people going through similar things in life. I have a couple of comments to add.
Regarding physical therapy–I have heard a lot of people comment on the benefit of “core strengthening exercises” to help with balance. this might help a little more with people with peripheral weakness, but with peripheral sensory loss, a stronger core= middle of the body will still help balance. The neurologist at the Neuropathy Association Supprt Group I attend is a strong advocate of sitting on one of those exercise balls to help the core of you get better balance. I have to admit I have not tried it as I am sure I would fall off immediatedly, but someday…. When you cannot feel your feet or how to reallign peripherally, better central control of balance and allignment will help.
You asked about vitamins. I think a lot of us do take vitamins and supplements. I think I do it as much for the hope that it might help as for a feeling that it is, but I also figure it will not hurt. Were you checked to make sure that you are not low on B12? The neurologist at the Neuropathy Association support group also advises to take a good multivitamin (100% RDA), consider additional B12, consider L-carnitine, consider coenzyme Q. I have seen some things about vitamin D and E deficiency associated with neuropathy. B12 is the one most commonly associated with neuropathy (still rare) and I would take it and a multivitamin. there is some information in MS that L-carnitine may help fatigue. Coenzyme Q helps mitochondrial conditions and energy production, but it is expensive. You can get neuropathy from too little or too much B6, so be a little careful with this one. I think the bottom line is that if you can afford it and it will not make you feel more like a sick person, it might to worth the effort to try some of these. I have to add that I have always been a person to quote that it is better eat well than to take vitamins, but I changed a little because of needing to try to help someway.
WithHope for a better understanding of causes and ways to improve these neuropathies.
AnonymousSeptember 15, 2008 at 3:31 am
I too (like Debs) used the exercise ball at balance classes. I ended up buying one for home to keep up the exercises that I was taught (my physio told me what size was best for me). At first when I started using it – I was hopeless! I couldn’t even sit on it – it was soo scary. But it didn’t take too long before I could sit on it and move objects (that were placed on low tables on either side of me) from say, my left side to my right side.
I did the course through a public hospital – so luckily it didn’t cost me anything:) I had to get a referral from my local doctor and then I had to be assessed by a doctor at the hospital and then a couple of months after that I started the course – I didn’t mind waiting though – it was worth it!
Good luck all,
AnonymousSeptember 15, 2008 at 7:50 am
I started out with Sensory Neuropathy and then it went into CIDP. I get my first IVIG’s this week. I hope! They said they were going to do it because I am having surgery. But we shall see! Just hope it works for me! This is a wonderful loving site to be in. Really great people in here. And everybody is so nice! Hope you get well soon! Take care!Hugs
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