tongue is numb
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June 11, 2007 at 1:03 pm
Hello to all . I havent posted in a while but still checking in. I am about 7 weeks into the 90mg ev other day steroids. We were supposed to be doing 8 weeks but at the 4 week appt, he said “we’ll see”. I say, we will stop. I notice no improvement at all. And maybe things are even worse.
The last few days my tongue is numb. What is that all about ?
And, Friday I went fishing with my sister and bro in law. They have a fishing boat. I was on the boat for a few hours and when I got off, I could hardly stand. I had to hold on to my bro in law and felt awful b/c they didnt know what I was feeling. I was glad it was dark b/c they couldnt see my tears.
I was very shakey and off balance like never before. Is it b/c of the boat ?
I am such a water person and love to be on boats and jet skis, etc. I cant understand what that was about.Saturday I took my son to the pool. Why I think I can walk in flip flops is beyond me. I walk like a 90 yr old woman with them on. My other sister was there and asked me about my “disease”…I told her my feet are numb, I cant move my toes, have the drop foot on the left, etc. She asked if I was worried I would trip. Yes I am worried. EVERY time I walk.
I have to go for now. I just wondered about the tongue thing.
CIDP has taught me two more things. Sunglasses hide your tears and you also can cry in the shower and nobody will know it.
I’ll be back later…thanks for listening everyone.Stacey
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June 11, 2007 at 6:10 pm
Stacey, I wonder if the numb tongue might have something to do with the high dose of steroids? When I started on 80mg a year ago it really had serious, side effects, losing muscle control etc. I had to quit taking it.
Flip-flops 😮 I hate regular shoes and I used to love my regular Birk sandals but finally had to face reality. I kept losing them and nearly fell a few times. I bought a new pair with backstraps that seem to work fine. Except my physical therapist (I just started PT) watched me today practicing walking with a cane again. “You need different shoes to get better support,” he told me. “Never.” was my answer 😀 “I won’t give up my Birks.”
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June 11, 2007 at 9:42 pm
I read what I wrote earlier today and I sound really down and out. Maybe I am…but not as bad as I sound.
Norb, I go back to the neuro next week and we’re suppose to talk about weening. He said we’ll have to look at the “big picture and decide”. My big picture is no change, other than side effects, and maybe even some worsening. If anything has gotten worse….it is yet very subtle. I do notice alot more balance problems. But shoes make an important difference. New Balance is what I wear mostly but I do like to wear my flip flops…I need to stop tho…to save myself the embarassment. Maybe if I had a cane….b/c when I push a grocery cart, I feel safe. But, I’m not bad enough for a cane.
The highs and lows of the steroids are something. One day I am flying, I can be angry or sad within a minute. I could cry b/c the sun is shining. It’s like post partum depression almost. I shake. I hate the shakes. Even when I am not shaking on the outside, I am shaking on the inside. Noise bothers me. I am not myself. I want to be off the steroids.
I’m scared that nothing is working for me. When we started the steroids (b/c IVIG wasnt working), he said it was possible things have halted and that the disease is done. My symptoms would be residuals. Or, it’s progressing.
I feel like it’s the latter. While it’s all very very subtle…I notice. And, then, maybe, I think…what if I am just feeling worse b/c I am so worn out and tired ? An estate sale, two garage sales, hubby in another car accident, full time job, working to get mother in laws house ready on occcasion, mother, etc….I am a wee bit spent. Can the fatigue make it as if things are getting worse ? When do I go somewhere else and what more should be done ? What about another test ? What about an MRI on my brain ?
Oh, if it would just go away !My sister asked me if I am taking the prednisone like i’m supposed to b/c I dont have the moon face. My face has gotten fuller. I can see it. Maybe she cant. Why do they ask such things. Why do they pretend to care sometimes and other times when I try to explain, they brush me off ? Do they WANT me to have the moon face ?
ok, here I go again….a mood swing…:)
One more week…I’m going to start getting off this stuff. How many mg’s do they ween at one time ?I’ve been away too long without venting. I see there are many new-comers…welcome…and good health, you have found a new family.
peace to all.
Stacey -
June 12, 2007 at 3:37 am
Hi, Stacey.
Sorry you’re having a rough time. I know the feeling. I’ve just come off the worst relapse I’ve ever had, and at the moment I’m still finding even little tasks nearly impossible. I need a holiday–from my body!
Regarding the numb tongue, been there, done that. My tongue, lips, nose–most of the lower part of my face–went numb about three years after my feet did. At my last dentist appointment the dentist mentioned that it looked like I had bitten the inside of my cheek on more that one occasion. I told her that the only times I had noticed doing so was when it brought blood.
Regarding having trouble walking when you got off the boat, I’ve found walking after riding in anything difficult. Here in London I take buses and the Tube wherever I go. I’ve learned (the hard way) to wait until it’s completely stopped before getting up, and then to grab the nearest rails and posts (and, on occasion, people) because my legs won’t be working properly (or less properly than normal). I always have problems with balance, but apparently there’s something about the movement of the vehicle that throws my balance off more, and it takes a bit of time before I can rebalance.
At any rate, hang in there and know that you’re not alone. Cry, scream, pound pillows, and laugh.
Best wishes in the battle,
Deb
LondonBTW, Norb, regarding shoes a friend recommended Masai Barefoot Technology, which I can’t find and can’t afford. But the principle–walking barefoot–is also seen in Earth shoes, which are easier to get and less dear. So I got a pair of sandals with wide soles and am finding that walking is easier; the wide soles help stabilize my feet laterally and the negative heels force me to walk more normally which is helping with foot drop. I have to have the strap on the back to keep them on, and have to pad where the side straps rest against bone (joy of muscle atrophy), but I’m finding them very helpful.
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June 12, 2007 at 11:39 am
I guess I’ve been in denial. I did not want to see the possibility that a numb tongue could be a direct result of CIDP. But when I read your comments, Deb, reality hit home. It can happen. Right now I am struggling with increasing numbness in my hands learning how to adapt, how not to drop and break dishes, how to hold a foam cup with coffee without totally squashing it. I just don’t want to think about what might be next.
Actually, Birkenstock sandals aren’t bad. They have a good anatomically correct footbed. Most of the time I walk around the house barefoot. I have to look into those earth shoes. I’ve seen them but never tried them out.
Stacey: Regarding weening off Prednisone, I wasn’t on the high dose long enough to call it weening. We went from 80 to 60, a week later to 40, another week to 20, and finally three weeks later I quit.
BTW, I did get an MRI of my brain three years ago in Thailand. The neurologist insisted I had Parkinson’s so I asked for this test. There was nothing but he still prescribed medication for Parkinson’s. He probably never heard of CIDP. A few weeks ago I got a CT scan of my brain because of a massive hemorraghe, removed since then. I have it all on a CD and will take it to the new neurologist I am going to see next week here locally. I don’t know if a CT scan shows as much as an MRI. I am trying to stop going to Denver all the time for IVIG treatment and do it here instead. Staying at my daughter’s house for three days at a time is getting to be a challenge. It is so tiny that it is like running an obstacle course. Climbing into the bathtub for a shower is an adventure. I am holding on to the window or sink for dear life always afraid to slip and fall. The shower stool which I have to carry in myself does help once I get settled. Here at home our shower is separate. It has a built-in seat and a long grab bar. Our house is roomy and there are no narrow passage ways, treshholds into the kitchen, toys or adult shoes all over the place. So, I hope I can switch treatments soon.
OK, now I sound like I am venting.
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June 12, 2007 at 9:07 pm
As I have been told on here many times….it’s ok to vent. 🙂
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June 12, 2007 at 9:33 pm
OH good time to vent let me let a few things fly! I want to add that I love my New Balance shoes too. I need a new pair! About not having sea legs after a ride in the boat is normal the dock seens to be moving way from you in slow motion. I would hold on to someone for dear life then. After riding in the car I am stiff from the constant giggling in my seat from the rough ride of our 4 x 4. OK, I am not giving up my 4 x 4 just like someone said they were not giving up their sandles. WE all have to vent and complain but when it comes to some principals we just have to stand firm and not give in to our stubbornness. I did have lots of problems with the sounds and was stubborn enough to learn not to stand under the steeple at noon when the church bells announced the time, the vibration was horrible and I just froze. That was the first time I had left my cane in the truck. Talk about embarrasses. I also had a episode in the pits when a car goosed the pedal just as he come around a bend. My toes launched me 6 inches into the air as my shoulders covered my ears and my head looked like a turtle. I bet that guy is still wondering what I was doing. It was all reflexes and talke about walking in sunglasses! I wanted to hide! I was wishing I had worn a knitted hat and could have pulled it down over my body and feet! That all happened last year and the vibrating from noise or movement has actually gotten better. IT will also disappear and I don’t realize it til I might over do it and it comes back. Another sign of getting better slowly! Have a great Summer!
About 3 or 4 months ago I have had trouble with my neck cramping from the breast bone I can feel it start to pull and it stops me from doing anything. It goes clear up under my tongue and make it feel like it is swelling and pushing up against the roof of my mouth. It has only happened 4 times on the right side and twice on the left. Now I don’t panic I know I am not having a seizure and that I can breath thru my nose. I talk myself into relaxing and it goes away. I have not had the numb tongue since I was admitted to the hospital that lost the ability to swallow as my systems shut down. Drinking cold things make my tongue feel like it had needles and pins. It is a weird feeling. I hope it goes away for you….ask your Neuro too. I make a list so I don’t forget any of my questions.
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