hands with cidp
AnonymousJuly 9, 2009 at 11:23 am
good morning Tjay
Yes my son Ryan has trouble typing now, his fingers freeze up and go into crazy positions. I do alot of typing for him. He is now looking at getting some software that he can download onto his computer that will allow him to speak and his computer will type what he speaks. This will assist him to go back to college this fall.
AnonymousJuly 9, 2009 at 12:01 pm
My hands/fingers were badly damaged by CIDP. I was diagnosed in 1998 and they were at their worst the first two years. My thumbs, especially the right, would lock and I’d have to move them around to loosen them up. My fingers would cramp and crumple on me and I’d call it “finger fumble”or “noodle fingers” I would say the worst damaged is my right thumb (it just does not work right) and my right index finger and I’m right handed. Hand writing is “EXTREMELY” tedious for me still and though my typing is difficult, it’s a lot better then it used to be and I can sit and do longer sentences.
Use of my hands is my contentment in life, so I will over-use them and that old “finger fumble” will come back.
My hands cannot button buttons or tie shoe laces, things like that, but velcro is GREAT! And I’m a dropsy person, my grip is very weak.
I just can’t say how much a person recovers because we’re all different.
AnonymousJuly 9, 2009 at 12:42 pm
OK, I have been lurking for a couple of months because my diagnosis is not firm. My neuro is still calling it idiopathic neuropathy because I do not want to do the nerve biopsy. I had my first 2 day pulse steriod infusions last week. He has discussed IVIG with me. My LP does not show any abnormal proteins and I have had all the hereditary disease and heavy metal bloodwork with no abnormalities. Everything I read on this site describes me. Now the hands thing. It started with the middle finger on my left (dominate) hand doing a trigger finger lockup. That finger will not straighten completely, but does not lock anymore. Now it is trigger finger in the right ring finger. If I bend it, I have to use the other hand to straighten the finger back. In the past 6 months I had DeQuivaines (sp) in my right wrist that had to be injected with cortisone. I drop everything I pick up, have extreme difficulty with buttons, etc.
Someone was discussing numbness of the tongue and I was shocked because I also have that. My feet and legs and now my butt are numb and I have a lot of pain in my legs. I take Lyrica 350 mg a day for the nerve pain. My neuropathy has gotten a lot worse in the past 6 months.
More history later if you like, but I just had to comment on the hands problem. I had not associated it with the neuropathy/CIDP.
Nice to meet you all!
AnonymousJuly 9, 2009 at 2:21 pm
THANKS for all the input. tell Ryan i said hi and hope he getting better. I was just wondering about the hand situation and i guess its comes with cidp. I have to go back to neuro this thursday to see if i can go back to work. Its going to be a toss up if i go. Because like i said the hand problem is affecting my writing and i don,t no an job that you can do if you can not write to read it. I just filed papers for long term dis. if i have to go that road i will be prepared. Agian nice to here from you all.
AnonymousJuly 9, 2009 at 5:37 pm
I have a question for you guys. How does a doctor check for heavy metals. I asked our pediatrician about it and he said he did not know how to do and when I asked the neuro, he said he didn’t feel it was necessary as Selah mets cidp criteria. I do not argue that but we have been having trouble with our water where we live and it is questionable. thanks in advance
July 9, 2009 at 7:33 pm
sorry no info
AnonymousJuly 10, 2009 at 1:42 am
Sometimes when holding a pen my hand goes limp. I’d written before about knocking over glasses of water, dropping items and hand/toe spasms.Last time I eat at a fast food place I dropped the whole tray contents. My brain signals just don’t make it to the muscles or I’ll slam into the doorway.I’m one huge black and blue bruise from head to toe.I walk with my feet wide apart for more balance. Using a cane doesn’t help much and really need a walker when out.
My face gets numb-feels weird. Like someone who’s had a stroke. My mouth goes sideways and if really tired I drool.I use a straw for drinking 90% of the time as I have trouble not making a mess. I now wear lots of pants with elastic waists. Swore I’d never do that but it so much easier.
I’d rather have the numbness than nerve pain. It all gets worst at night.
CIDP seems to change some every day. It morphs.
AnonymousJuly 10, 2009 at 11:40 pm
If I write too long, the fingers go numb. same for paint brush, any tools, etc. I used to think it was Carpal tunnel, the symptoms are so similar. I also thought I had plantar fascitis, in my feet, same thing.
Not to get off track. I am guessing that damaged nerves feeding muscles cause dysfunction and loss. Less muscles working lead to overworked muscles and also to bummed out tendons. Hence tendonitis.
I have both hands and feet involvement. Right now the degradation of my hands is probably 25% that of my feet. Both are still getting slowly worse.
By the way, it takes a long time to type. I try to type it all, then go back for typo’s.
AnonymousJuly 11, 2009 at 12:07 am
Remember that your body’s communication system isn’t working correctly. Crampy fingers and toes sure do hurt sometimes 😮 I have found that sometimes taking a couple of kelp tablets and being sure to take the Calcium/Magnesium/Zinc supplement helps. Other times, well, I just cry with the pain, take a warm bath in epsom salts and take a nap!
AnonymousJuly 12, 2009 at 8:51 am
Ryan’s fingers have been locking up on him lately and he can’t hardly type anymore so he is looking into getting software to put on his computer that will allow him to speak and then the computer types for him. I htink its called Dragon Speak.
His feet are numb and wasn’t able to move them or wiggle his toes but since his last IVIG treatment he just got this week he can wiggle his toes on his left foot.
He is unable to drive since there are no reflexes in his legs or feet and his feet tend to be to numb. he sometimes doesn’t know where his feet are because he can’t feel them. or he has strange sensations that he thinks they are twisted up when they aren’t. anyone else have that problem?
Anyways since he can’t drive like this he is learning how to drive with hand controllers. Once he passes the test using the hand controllers he will be able to have them added to a vehicle and have so much more freedom than he has right now.
AnonymousJuly 16, 2009 at 3:05 pm
I have had the cramping and distortion off my feet for many years, but it is just starting to affect my hands. The numbness and tingling in my hands has been progressing over the last few years and because it was worse in my right hand (my mouse hand) I suspected carpal tunnel syndrome in combination with my CIDP. Because my job is mostly computer-based, my office provided me with Dragon software. They also provided me with a coach to get it started and set up a program with four hours of phone consultation included in the contract. I find that it works quite well as long as I keep up with the dictionary and user files. The program works with your voice to learn words and inflections, and the investment of time spent setting up the program makes the difference.
We still don’t know if I have carpal tunnel syndrome or not… I know my right hand still hurts worse, and seems to get worse when I work on the computer. But I also have this symmetrical numbness and tingling that goes along with CIDP. I have been very honest with my supervisors — but they just want me to be able to do my job and do not care whether it is a pre-existing condition or caused by my work. Either way it is exacerbated by my work which makes this a legitimate claim.
Over the years that my feet were denervating, my husband and I were fascinated by watching the distortions. It was like there was an alien sharing my body. I had to wear a brace at night that held my feet pointed up or the cramps would drive me to dance madly around my bed. Currently my feet are numb from the knees down, and I rarely have those spasms. I do find that magnesium, calcium, and plenty of water seem to help lessen the symptoms. But nothing ever takes away the pain. maggie
AnonymousJuly 18, 2009 at 11:06 am
The cramping for me is when the pain is at it’s absolute most intense! And, like others, I go into all kinds of distortions. I don’t have carpel tunnel even though the pain is similar (it was checked). I take a cocktail of meds that keeps this down quite a bit. I still get jerked out of a good sleep now and then. My hands aren’t as useful to me as they were … they hurt and are weak. I can’t write but typing doesn’t bother me. Moving my fingers doesn’t bother me – gripping anything (including a pen/shopping cart/etc) is horribly painful and starts the spasms. I was going to physical therapy (ordered by my doctor) 3x/week to learn what I can push and what I need to leave alone … I now do the same exercises at home. When I get better, I will go back to learn what I can add … but in the meantime, the stretching is the best for me to reduce the cramping.
The Dragon software is really great. I moved a couple of years ago, but before that I worked with our wounded heros returning from the Middle East with missing parts (arms/legs/fingers/etc). I would help place them in offices where they could get some different experience while they were going through therapy and waiting to be released from military service. Most of the heros I worked with had missing limbs and needed special equipment/software. They were an amazing group … during this time I learned a lot about all kinds of adaptive equipment available for disabilities. I would suggest anyone having trouble working or performing life sustaining skills, request to go to an occupational therapist. I haven’t needed to do that yet, but they really know the latest and greatest and there are some amazing adaptive equipment available now. I helped one young man go into IT – he was missing an arm (shoulder down) and he used a one-handed keyboard and the Dragon software, headset, etc and was able to perform at full level. So, it’s worth an ask!
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