I was wondering how many of us out there share the same symptom: Debilitating CIDP in both hands, but only mildly (primarily) in left foot. Symptoms started as numbness/tingling in small finger and ring finger of left hand with generalized tremor about three years ago. Neuro probably thought it was carpal tunnel and did nothing. Starting in June '12, debilitating numbness/pain/weakness spread to all fingers of both hands. Couldn't button a shirt, tie shoes, drink from a glass with one hand, keep the toothbrush rightside up, a million little things. With 24/7 tingling pain, not responsive to meds, even 300mg Gabapentin. My feet are only affected with a little bit of tingling, foot drop on the left and minor equilibrium problem.
I only started my first 5 days of ivig a month ago, next bout is next week. I'm pretty much an invalid without hands, taking my pills with a spoon. Anybody else have it in the hands? This email has taken 45 mins one-finger.
I had symptoms in my hands only for a few years but just mild as in constant tingly / pins and needles then slowly stopped using my left hand for things as i lost grip and fine movement ,wa slw so didn’t really notice it till it was noticed by others I didn’t really use that hand much.spread to other hand that’s when I started to seek help and expecting to be told carpal tunnel.
It was whilst being sent to constant different drs and exams I then started to nice my left foot was starting to get similar symptoms and now both feet.
Been on monthly ivig but it’s not really doing much ,well some days I think it is others I don’t ,it certainly ha not been the major effect I was hopping for.
Good days and hard pushed to notice anything ,bad days holding cutlery in a club like fashion and pens and zips not a chance.
Hello and yes its tough - i only sometimes loose all strength in my hands and arms - and when i do I find it quite challenging and don't currently have a plan in place. Mostly my legs are effected and I have a plan when relapses occur. My only thoughts are to have a Plan B - which I have for my legs - and now creating one for my arms and hands.
Like you Im not able to open things, hold things and Im surprised when things slip out of my hands. I'm not sure of your circumstances and how much support you have around you - for me, I have a list of family and friends who roster to help. I try and exercise my hands - but im not sure if this helps in anyway. I have an appointment with my neuro-physio and hope to learn more.
I often feel confused about "how good/bad" I am - so "my little team" makes that decision for me. And at the moment it seems to last around 48 hours and then I regain some strength. Take care of you Janie
Yes, loss of strength in both hands with severe muscle loss in right hand and about 1/3 of power left even on a good day.
Bad days mean not buttoning a shirt, trouble putting on sockes, falling over, getting up stairs etc. , the most common tasks…
IVIG puts me back on my feet after a few days. (100 grams every 3 weeks) combined with CellCept now feeling pretty good and can function although at only at a % of normal.
Exercise and stretch daily, even when it feels impossible.
i have carpal tunnel in both hand's worse on left, i had surgery on the wrist aug 1st then elbow surgery nov 14th, doc says tit could take uo to a yr, to get my feelings back in me fingers,go figure not to mention the numbness in my feet and pains, i have such a hard time taking the cover off of a jar of pickles most time i can't and my wife has to do it,boy that's a hard pill to swallower i have always been strong as an ox and lifted weights most of my adult life but within the last 2 years slowly but surely i was lifing less and less weight till last spring i had to give it all up i wish i was popeye and i could take a can of spinach and be strong again
I understand my legs and feet went first tried to get up one Sat morning and could not walk two weeks later my hands were gone could not hold anything not even to feel my self. That was 18 mons ago - as far as the IVG I have had 7 rounds and my 8th is in Jan, As far as meds they can possibly increase the Gabapentin I am taking a higher dose that helps some what with the nerve pain and they have me on stronger pain meds for the pain. I have not been able to work. Hang in there the recovery time is not as as we want.
I am the classic case: it started in my feet and legs, and only later moved into my hands. At its worst, my legs were so bad that I could not stand up at all, but the symptoms in my hands were that I had problems picking up a knife and fork. But, I could still feed myself.
However, I recently met a lady with CIDP whose symptoms seem very similar to yours. She could walk without any problems, but could barely pick up a knife and fork. She could not pick up a glass of water, or cut her food.
So, you may be a bit unusual, but by no means the only one with these symptoms.
I have the same symptoms. I have sensory and motor weakness in both hands. My left foot is worse then my right. I have tried most protocols and none worked. Prednisone made me feel better but after 3 years, my other organs were affected. Solumedrol IV helped but my heart would race after the procedure. I tried IVIG for a year with 0 results.
After dealing with CIDP (MADSAM) for over 10 years, the only result from these meds was diabetes. I did not have diabetes until I used Solumedrol. (Related or not). Today, I don’t take any meds except for Advil. I live with the pain every minute of the day. I have learned that being positive all the time really works and realizing that everything happens for a reason. Staying out of depression is key. Mind over matter is the only drug that works for me.
Yep, I've got it mainly in my left hand, which means I don't play guitar anymore, and I'm a two finger typist too. I've been on IVIG for six months now and haven't gotten any better, but on the other hand I haven't gotten worse. I also have constant pain in my right leg from my hip to my ankle. Right now I'm having Physiotherapy for my hand to try and get some of it to work. Gary
I do as well. Mostly tingling/numbness in my right finger thats how it started. I drop things as well. Its in both hands.Some days are better than others. I usually have to have my family help open things like a diet coke bottle top.Cant open anything with a can opener,button things,fasten a bra,stand my hands in water as its very painful. God i think the worst was having to wear gloves on my hands while driving because i couldnt stand the wheel sliding thru my hands. I have little to no feeling in my legs from the knees down.My arms get very heavy and i can only fold so many clothes before it feels as tho i been lifting 50 pound weights all day and have to stop. Sometimes i cant feed myself. Its very frustrating. Just started on IvIg in Oct.getting my second set of infusions next week.I take 3,000 mililgrams of gabapentin and tylenol3 for the pain along with just being put on cell cept after not being able to tolerate immuran. !,000 mg 2 times daily. It seems to help with the pain. Hugs you tight..stay strong and know theres others experincing what you are..you are not alone ...big hugs
well I have it really bad. Did a mri and found while the nerves in my leg are dead and gone, the nerves in my arm have been eaten and have grown back larger. So i have compressed nerves in both arms, leaving me have "lawn mower" hands that hurt and shake like leaves. So both hands and feet are hurting bad. I am on IVIG 62 grams 2x every 3 weeks. Now it is just preventative as the damage is done. hope this helps.
It sounds very similar to how the numbness and tingling in my hands begins, but I still have fairly good function. However, there are significant associated tremors, particularly in the hands, which is only controlled by clonazepam. I have some symptoms in the feet, but not nearly as bad as the hands, which is not typical for the textbook presentation, but all of us have different symptoms and progression of symptoms.
To add injury to insult, when the hands symptoms first started, I almost completely amputated my right index finger in the lawnmower. Although I can use my hands better than you describe, I can certainly sympathize with what you are going through. So yes, you are not alone. I have major problems with my equilibrium, and severe fatigue. I just have to take it one day at a time.
Incidentally, in case there are any typographical errors, I am using DragonDictate to compose this reply. If you type a lot, it is well worth the investment, but you have to do a lot of voice og the recognition training to make it accurate. Good luck!
I noticed numbness in my feet and left leg first. My family doctor let it slide for several months before referring me to a neurologist where I was tested for everything resulting in CIPD dx. (I also had high protein level seen in spinal tap) My hands are really sore and weak now, can't open or close zip locks etc. Typing and writing is painful, and if I lift my arms out and reach, it causes immediate pain and tingling. Stress increases the pain, so anything you take, or do to eliminate the stress is helpful, meditation helps me. I get IVIG for two days every other week and have for almost a year now. I consider myself lucky, I only need a cane if I get too tired.(which is almost every night) I also take Gabapentin and Vicodin every 4-6 hours and will soon restart my krill oil, zyflamend, and vitamin D. Symptoms and treatments seem to be different for all of us. Peace Nancy
my feet where the first to go. When my hands went it was to the point that I could not even hold a fork and I had to have someone feed me. That was very hard for me. As far as the IVG I have had 6 or 7 sessions with another one set for the 2 week in Jan. I got the most improvement from the 3rd session some people it takes longer - keep your head up Good Luck!.... pampers said:
I had symptoms in my hands only for a few years but just mild as in constant tingly / pins and needles then slowly stopped using my left hand for things as i lost grip and fine movement ,wa slw so didn't really notice it till it was noticed by others I didn't really use that hand much.spread to other hand that's when I started to seek help and expecting to be told carpal tunnel. It was whilst being sent to constant different drs and exams I then started to nice my left foot was starting to get similar symptoms and now both feet.
Been on monthly ivig but it's not really doing much ,well some days I think it is others I don't ,it certainly ha not been the major effect I was hopping for. Good days and hard pushed to notice anything ,bad days holding cutlery in a club like fashion and pens and zips not a chance.
You write a pretty good email even with one hand though. With me it is in my right hand. And being right sided it is a learning process to try and do everything with the left. Right now it only hits the thumb and all down the arm. I still have to be very careful when picking up a glass or plate with my right hand. I can see the glass I can see that it is in my hand and the next thing I know its on the floor. I am sorry you are going thru this, as it must be very frustrating for you. They tried to tell me carpel tunnel to in the beginning but it is not. I really hope it gets better for you and you can regain some control. Take care.
As I am typing this, only my left hand is numb and tingling but seems to go back and forth. At night-time both hands from the elbows down are numb and tingling making it very hard to sleep. Additionally, my left leg (mainly my left foot) is numb and tingling. This is new since in the past, my symptoms were mainly on my right side. I'm wondering if I am having some type of replapse as my symptoms are getting worse and I am on 40 mg every other day of Prednisone and 75mg twice a day of Cellcept. I don't like this feeling at all and am desperately awaiting an appointment with my neurologist. The previous visit with my neurologist 3 months ago, he also thought it was carpal tunnel, but it is so random and is in my left leg too.
Hi All ,,, Lots of replies.. God bless you all.... It is just a creepy crawly grubby disease slowly eroding our bodies...If you find something you think works stick to it...I am on IVIG but it still keeps sneaking up on me.I think my best advice to anyone with CIDP is to really clean up your food and drink .. Keep it really simple healthy and basic , try to stay active as best can , be loving and giving and think positive. Have a blessed Christmas and a rewarding satisfying New Year. Ernie Harris specially at this time try and go easy on all the rich food and drink.