Yes exactly, I know this feeling. It's been a number of years that I have held onto the stair rail especially when going down for some reason, I have always said to my wife that I have to actually keep my eyes on my feet while going down the stairs in order to see them land on the steps because I could not feel them or tell where they were. It seems better on the Lyrica since the "signal noise" of the intense tingling and buzzing is gone I have a little better sense of position.
Yes! I can go up stairs and ladders more easily too. If I fall, I fall into the steps but when I go down, a fall could be a disaster. I don’t go down stairs or ladders without good railings or my wife or friend right there with me. I can still drive bec. My legs have developed a “secondary” sensory system that tells me where my feet are and what they’re soing. On bad days I won’t drive (10%).
Today is a classic example. I need to go into the attic to get Christmas stuff. I still do it with help bec. If I don’t, I feel more helpless and useless.
I'm with you zepplin, scared out of any wits I may have had. Recently diagnosed with CIDP and start IVIG on 12/8. Scheduled for 5 consecutively days of Octagam 5% a total of 30 grams. I am taking 900 mgs of Gabapentin and 60 mgs of Prednisone daily. So sleepy and tired all the time. Fell asleep standing up, hit the kitchen counter, gave myself two black eyes and a broken toe. Not sure if the sleepliness is a side effect of Prednisone, Gabapentin, the disease or a combination.
Will share my progress.
There is an article by a PT in IGLiving about HOME physical therapy for GBS/CIDP SINCE OCCUPATIONAL AND PHYSICAL THERAPY may be hard to come by with the way insurance cos. Are almost blacklisting many who have GBS/CIDP. Searches for “physical therapy CIDP” brings a host of good articles. Happy exercising.
Hang in there Linda. I fell and broke my foot. Cut my Gaba back. Good luck with the IVIg.
So sorry to hear that. I have a dual dx of MS & CIDP, but honestly believe that my CIDP was misdiagnosed as MS back in 2010. In April of this year, I received a Tdap immunization after being exposed to a person with whooping cough (pertussis) and a few wks later was unable to brush my teeth. I went downhill from there and in late May, received the dx of CIDP. 1 wk later, on June 6th, I was getting my first round of IVIG. I did one big dose instead of a titration over a few days time because I was rapidly deteriorating at that point. As a nurse, I believe that in treatment of any disease, that you should start out small and work your way up....use the smallest dose of medicine possible that will help you achieve the desired results...you don't want to pull out the 'big guns' early on if you don't have to because you won't have anything left to work up to if things get worse (and anything can always get way worse...as hard as that might be for you to believe right now) and it is likely that your insurance won't want you to try IVIG until you have tried and failed prednisone. You could be one of the lucky ones that gets and responds to prednisone as a first line of defense, but that will really depend on your doctor's experience with CIDP and his/her preference, and remember, your doctor works for YOU. I got lucky with my insurance and they allowed me to go straight to the IVIG, but again, I was pretty bad off and was going down hill fast. When I see my doctor, he examines me, goes over my current complaints and then asks what it is I would like him to do for me. I recently asked for an increase in dosage on my IVIG and he complied and even increased the frequency of my infusions and now I am feeling MUCH better and just had an infusion today. The very first IVIG infusion really kicked my butt but now I sail through them without much problem other than getting cold. I got done today at 430 and now it is 5 hours later and the hot flashes are starting to kick in. I will be opening windows soon in 30 degree weather and my husband and children will be in parkas..lol. I guess what I am trying to get through to you is everyone is different, start small (if you can) and work your way up and figure out what works best for YOU. CIDPer's are like snowflakes....no two of us are alike. Good luck and God bless!
-----but MS and CIDP are more and more being treated as to sifferent facets of the same disease process. Dispite the fact that my sister has MS and I CIDP, my neuros still say they are separate defying the odds. Frustrating!
Sunshine said:
So sorry to hear that. I have a dual dx of MS & CIDP, but honestly believe that my CIDP was misdiagnosed as MS back in 2010. In April of this year, I received a Tdap immunization after being exposed to a person with whooping cough (pertussis) and a few wks later was unable to brush my teeth. I went downhill from there and in late May, received the dx of CIDP. 1 wk later, on June 6th, I was getting my first round of IVIG. I did one big dose instead of a titration over a few days time because I was rapidly deteriorating at that point. As a nurse, I believe that in treatment of any disease, that you should start out small and work your way up…use the smallest dose of medicine possible that will help you achieve the desired results…you don’t want to pull out the ‘big guns’ early on if you don’t have to because you won’t have anything left to work up to if things get worse (and anything can always get way worse…as hard as that might be for you to believe right now) and it is likely that your insurance won’t want you to try IVIG until you have tried and failed prednisone. You could be one of the lucky ones that gets and responds to prednisone as a first line of defense, but that will really depend on your doctor’s experience with CIDP and his/her preference, and remember, your doctor works for YOU. I got lucky with my insurance and they allowed me to go straight to the IVIG, but again, I was pretty bad off and was going down hill fast. When I see my doctor, he examines me, goes over my current complaints and then asks what it is I would like him to do for me. I recently asked for an increase in dosage on my IVIG and he complied and even increased the frequency of my infusions and now I am feeling MUCH better and just had an infusion today. The very first IVIG infusion really kicked my butt but now I sail through them without much problem other than getting cold. I got done today at 430 and now it is 5 hours later and the hot flashes are starting to kick in. I will be opening windows soon in 30 degree weather and my husband and children will be in parkas…lol. I guess what I am trying to get through to you is everyone is different, start small (if you can) and work your way up and figure out what works best for YOU. CIDPer’s are like snowflakes…no two of us are alike. Good luck and God bless!
Thanks Geepster, I have never had any pain in my feet, ever. Just icy cold starting at toes and going to knees, Gaba has never helped. Prednisone does help. Since on Prednisone can feel my feet and toes for the first time in a long time. Is there anyone out there that has had the icy cold feeling that's like walking on two icebergs? With two black beady eyes, moon face and the walk like a zombie, my grandsons think I would make a good extra on "The Walking Dead".
Geepster said:
Hang in there Linda. I fell and broke my foot. Cut my Gaba back. Good luck with the IVIg.
I had the Ice cold feet and legs about 3 years ago, it gradually changed into complete loss of feeling with intense tingling followed by wrenching cramps like I'd never had in my life. Eventually the cramps let up. A few months ago I started on Lyrica which has helped reduce the pain and intense tingling. I've learned to walk fairly normally except for when my balance it too impaired and I need a cane to help maintain an upright position. As I've alredy mentioned, I can't walk down stairs without seeing where every foot step lands and hanging on to the rail.
My feet and hands are cold and cold-looking (blue) almost all the time.It can be one of the signs of many polyneuropathies. None of my meds helps that so I’m glad the pred helps you. Can’t take pred. B/c of other problems. Envy your relationship and cooperation with your neuro.
Linda Meyer said:
Thanks Geepster, I have never had any pain in my feet, ever. Just icy cold starting at toes and going to knees, Gaba has never helped. Prednisone does help. Since on Prednisone can feel my feet and toes for the first time in a long time. Is there anyone out there that has had the icy cold feeling that’s like walking on two icebergs? With two black beady eyes, moon face and the walk like a zombie, my grandsons think I would make a good extra on “The Walking Dead”.
Geepster said:Hang in there Linda. I fell and broke my foot. Cut my Gaba back. Good luck with the IVIg.
I have horrible pain in my feet and hands. Legs and arms are very weak and sporadically have pain. I have ti wear compression gloves and socks to help with the pain and sensitivity. I feel freezing burning stabbing crushing cutting being scraped with coarse sand paper. Ivig helps the most. I take 9 neurontin a day 300 mg. 3 Oxtellar 600 mg. And 45 mg of baclofen. I can’t touch a towel or carpet without extreme pain. I wear gloves and socks 24/7. I use latex gloves to eat and rubber gloves to wash. I am also in a power wheelchair. It’s all about attitude. Look for the one thing you can accomplish everyday. Anything you can do will make you happy.if you look at what you can’t do you will be miserable. You can always have people over and be the person you always were. Play cards and games by resting your arms on the table and using a card holder. Enjoy life. It’s not over its just different.
Jennifer I am so sorry, cannot imagine, but your attitude is encouraging. Is CIDP your only diagnosis or do you have other problems along with it. Did not know CIDP could have such devastation to the body. Thanks to everyone responding to the cold icy feeling. I thought I was the only one.
Jennifer, I can’t imagine what you are going through. I can only say that your courage in face of the extent of your disease, is remarkable. it will serve as an example and a goal for all of us to strive for.
For Linda: I’m still waiting to see if I get the freezing chills that sometimes follow the Ig infusions — so far, so good.
Well I can certainly see that CIPD is a different road for each person. I can also see that the one thing in common is a positive attitude! I was approved by my insurance for IVIG and will be starting Jan.8. Your comments have really helped me start to understand the journey I am starting and I look forward to your encouragement and enlightenment to help me through the hard times. Thanks for your support!!
Linda, cidp is my only problem. Dr. Said I have severe chronic progressive cidp.
Well, that's good news! I hope you do as well as I have and God Bless!
Depending on how far down you are? It took me about 3 -4 months before I could walk unassisted again. About another 5-7 months before i had any range, with PT three times a week. It's not an overnight cure and there's going to be some effort on your part required as well! So hang Tough!!
At my treatment center I'm the poster person for IVIG Treatments, my Nurses tell my story to others as to what they can expect by my results! Lol!
Keep us posted on how you Do!!
Last week breezed right through the 5 days of ivig infusions, this week not so good. Extremely tired, sleepy, sleepy sleepy. Is this a normal side effect? On the bright side, the icy coldness is gone and am walking much better, only need a cane for long walks. Life is good.
I always got very tired/sleepy after IVIG sessions. I tried to fight it at first, but finally gave in. I would start at 7:30 am and be done before lunch. I got in the pattern of coming home, having lunch, then lying down for a long nap, sometimes as long as 2-3 hours. Then, I would wake up feeling much better, and more functional for the rest of the day. I was afraid that the naps would keep me from sleeping at night, but it never had that effect. Once I accepted that, it was easier to deal with.
Bill
Zeppelin, would like to hear how you did with the infusions. One thing I learned, if you are on Prednisone don't ever take ibuprofen for headaches. I did and it caused stomach bleeding. Spent Christmas day in bed with nasty pain. Prednisone is so hard on the stomach. I started out with Prevacid (4 weeks) then read the directions on the bottle and stopped. Took abut 12 antacids a day. A nurse told me that her husband who was on Prednisone for a year used Pepcid AC and it worked well. I am using that now, but not sure of the long term effects. Does anyone have a remedy that can be used long term.
Linda
Omeprazole 20mg once a day have kept me from the bleeding i had last year and the year before.
If you bleed so easily maybe you and your doc could revisit the prednisone bec. It is well known to cause ulcers and bleeding. Tylenol does not! I go with Horizant 600 mg daily and tylenol , Benadryl, and hydration with ZERO starting the day before and continuing to the day after. No side effects. I may just be one of the lucky ones.