Hello,
First time on site. Have had CIDP for over7 years. In the last 7-8 months have developed tremors in both hands. Getting MRI Friday. Don't know if this is a part of CIDP or new problem. Getting very difficult to write with my hand or hold a cup of coffee without spilling it. Any comments?
Hello John, Ive had tremors for years now, actually thats why I saw the doctor and how the CIDP was found to begin with. My first neuro (changed doctors because we moved out of state) said that mine are part of the disease. I have the same issues also, with writing, holding a cup and etc... When I have a flare, I will hold my hands in my lap and wait for it to subside, that's anywhere from 2 min.to 30 min. I can't do the MRI thing, I'm claustrophobic and I wig, even in the open type...UGH!!! I wish you the best and it's nice meeting you!<><
Hi John,
My son has had CIDP now for a year. He developed shaking hands when he was tried on steroids. Steroids have been stopped now and the shaking has gone. Dont know whether this is helpful or not.
Best wishes,
Brenda
Hi John,
Tremors in my hands were one of the first symptoms I had. I had beautiful handwriting, but got to the point my writing looked like I was 3 years old. Used travel mugs with lids for coffee, and bottles for everything else. We were at my cousin' wedding and my sister-in-law asked me to get her a mixed drink. Short walk back, used both hands to carry and spilled over a third of it.
The tremors are better now and my handwriting is back to about 75% now with years of immuglobin treatment. Still tremble when due for treatment or having a flare, which I have often.
This disease is horrible, and you never know what is CIDP and what isn't anymore.
Take care, Chris
I have pain in both my hands when writing, and weakness. It is hard to open and close zip lock bags and forget opening jars. When I lift my arms over my head the pain is excruciating. I've been on IVIG for 8 months. I hope you find some relief for the tremors I know it can be an embarrassment. My legs get tremors when I walk and it makes it hard to get through a parking lot without feeling like people are looking at me. Good luck and please keep us updated on your progress.
Hi John
I got the tremors 20 months after I had cidp in both hands. I had the same issues with writing, I was unable to eat by
myself hold a cup bathe or dress by myself. My tremors has got much better now but it's not gone, I stop all the
medication for one year now and I feel better. The only think that I do it's accupuncture every two weeks.
Best wishes,
Maria
Hi, does accupuncture work?
MSakkis said:
Hi John
I got the tremors 20 months after I had cidp in both hands. I had the same issues with writing, I was unable to eat by
myself hold a cup bathe or dress by myself. My tremors has got much better now but it's not gone, I stop all the
medication for one year now and I feel better. The only think that I do it's accupuncture every two weeks.
Best wishes,
Maria
It's working for me better then medication and has no site effects.
Hi Johnz,
I have had a tremor in my right hand now for about 15+ years and it is getting worse. One of the Neuro's I was sent to by my reg Neuro told me it is a Familial Tremor. No one had ever given me any treatment for it over the years. It has got worse over the past 8 years or so, same thing with spilling things, eating is quite the challange any more...When I get nervous or upset at all, it is really bad. There is also alot of pain and I drop things all of the time, the numbness in the mix with everything else is quite a battle just trying to do anything is nerve racking!!!
If anyone hears of any treatments or anything I would like to hear about it too...
Gods Blessings...
& take care,
Pauline
Welcome to the site. thanks for posting!
Hello and welcome to the group,
First let me say that I've found this Support Group a God send. I don't know of anyone in my area with CIDP and I don't go to the local CIDP/GBS group meetings because I also have Social Anxiety Disorder and social activities with strangers causes enough stress to send me to my bed for several days afterward.
I also have tremors in my hands. I can't write anymore, not only is it illegible, it's embarrassing to look at. I have trouble typing because my fingers are so weak and numb that I don't press the keys all the way down or I tremble when I tap on a key and the same letter repeats.
Then there are the CIDP sneak attacks when I've flipped food across the room or dropped anything I may be carrying. No one lets me carry food or anything breakable anymore, hey, maybe there is a positive side to CIDP!
Keep smiling, Lindae
Hi Lindae, I can relate to things flying across the room,typing and writting. I am finding it hard to even sign my name.It ends up like scribble. Please don't dispare over your writting. Take a look at your Doctors writting,and he is well educated?LOL.
As for dropping things,I use a "pick up tool".I I didn't have that I would be spending half of my day with my nose on the floor.I have no balance,so most times if I bend over I end up on the floor.But that could be caused by the Ataxia I have favourite quote,"I used to complain that I never had shoes untill I met a man who had no feet" There is always people who are worse off then me.So keep your chin up and think happy thought's. Shirl
Hi Shirl3, You are so rite ! There is always some one worse then me .so I thank GOD and be happy for what I have.
And I'm trying not to complain.
Hi Lindea, Are you on IVIG? After 7-8 mo of treatment my handwriting and typing has improved some. I can't use my hands for long, but takes longer before the pain gets too bad. I also have anxiety and don't get out much,so this support group has helped me immensely.What I have found here is encouragement to be thankful for the good moments. Thank you for your post.
Lindae said:
Hello and welcome to the group,
First let me say that I've found this Support Group a God send. I don't know of anyone in my area with CIDP and I don't go to the local CIDP/GBS group meetings because I also have Social Anxiety Disorder and social activities with strangers causes enough stress to send me to my bed for several days afterward.
I also have tremors in my hands. I can't write anymore, not only is it illegible, it's embarrassing to look at. I have trouble typing because my fingers are so weak and numb that I don't press the keys all the way down or I tremble when I tap on a key and the same letter repeats.
Then there are the CIDP sneak attacks when I've flipped food across the room or dropped anything I may be carrying. No one lets me carry food or anything breakable anymore, hey, maybe there is a positive side to CIDP!
Keep smiling, Lindae
Hi, I didn't mean that you were complaining. I know it's hard. I live in Au and we don't get the support that USA sufferers seem to get. I recently got my medical records from the Alfred Hospital,(where my Neuro is) and back in 1998 one Neuro wrote that they had misdio my condition(for 35 years). Nobody told me then. It wasn't untill I went back to them in 2002 to tell them I was dropping things, my feet splitting ( Not knowing untill I noticed blood on the floor) They admitted me in Hosp for a week of tests then told me I have CIDP. Gave me a course of Intergram P. Told me that didn't work,told me that there was nothing they could do as I was one of those people that couldn't be helped.Bye. I feel that if I had private health and not on a pension they would have done more. It makes me wonder how many others have they have fobbed off. Enough of my rambling. Please keep thinking positive thoughts,and God bless. Shirl
MSakkis said:
Hi Shirl3, You are so rite ! There is always some one worse then me .so I thank GOD and be happy for what I have.
And I'm trying not to complain.
Yes, I trried IVIG but it didn't work for me so my neuro had me go to plasmapheresis 3xweek for 2 weeks. It helped as much as could be expected and the azathioprene I take is keeping me from relapsing in a hurry. It's been 2 years since the plasmapheresis and I have been going downhill very slowly and I don't want to ask what happens when I can't walk again.
I too have very little balance and if I want to bend over I'd better have something to hang on to if I don't want to fall on my face.
Take care and remember you are not alone. Lindae
Another way to look at is what happens if there is another treatment that can stop the decline. I can relate to the not wanting to ask. My pain is increasing and the pain med isn't working like it used to. All the med's have so many side effects so I try to put up with the pain. I have heard there is several IG types, have you asked your doctor? Stumbling is embarrassing but humbling at the same time. I plan to make today the best I can. Peace
Lindae said:
Yes, I trried IVIG but it didn't work for me so my neuro had me go to plasmapheresis 3xweek for 2 weeks. It helped as much as could be expected and the azathioprene I take is keeping me from relapsing in a hurry. It's been 2 years since the plasmapheresis and I have been going downhill very slowly and I don't want to ask what happens when I can't walk again.
I too have very little balance and if I want to bend over I'd better have something to hang on to if I don't want to fall on my face.
Take care and remember you are not alone. Lindae
7 years, mmmm, sounds familiar, mine started with a drop foot in 2005 and it took five neurologists passing the buck before I was diagnosed. I guess I'm lucky, I only have tremors in my left hand, but it makes playing guitar impossible at this time. Since I'm left handed, I also find it hard to write, but the advantage is no one can copy my signature. Spilling coffee has become a CIDP related art form, because at this point there's nothing I can do to stop it. I'm sure your Neurologist will be able to figure out whether it's related or not. But either way stay: positive, positive, POSITIVE! Gary
Hi John,
I was diagnosed with CIDP at the end of June.
Tremors were a reason for my original pcp visit. I noticed about 4-6 weeks after my feet went numb, then my hands and face then I was shaking but I attributed it to too much coffee. I was drinking a second cup because I was so tired. The tremors come and go and definitely make certain things difficult like carrying drinks without kids, typing or writing by hand. It’s yet another life adjustment we must make in our lives.
I have had tremors since the beginning. Food would fly off from my fork, I would drop things...It was severe. Now it only gets bad when I am really anxious or haven't had my meds. I was first told it was probably from my Cellcept, then they said maybe from the Neurontin. Well, I am still on both. But much less of the Neurontin and I still get it a little bit. Not sure if the Neurontin played a role or not. As far as writing...I got to the point that I couldn't write at all. I couldn't even type. And I didn't dare carry drinks. But now I can type and write again. I can also carry drinks and eat without food flying.