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Old 01-28-2010, 12:56 PM   #1
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Question B12 deficiency & clumsy hands Neuropathy

I have recently been diagnosed with PN. The Neurologist believes it is from B12 defiency, as mine was in the low 200's and I have risk factors of abdominal surgery, long term use od previcid and had stopped supplementing 6 years ago due to stomach problems. The worst part about this is that my hands are very clumsy. It is so disturbing that I have been taking Ativan, and since I do not want to keep increasing the dose I now have withdrawels each day until I reach a "theraputic" dose.

I have heard perhaps some people on this site may have this type of neuropathy. I am taking the drops and injections. My weakness seems a lot better, the numbness may also be a little better, but the hands still the same.

Does anyone have any experience with these symptoms?

I am discouraged., depressed.

laurie S.

 
Old 01-28-2010, 03:50 PM   #2
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Re: B12 deficiency & clumsyy hands Neuropathy

hi laurie,
I,too, have idiopathic PN. i give myself the injections also. the sublingual didnt work as a result of my gastric bypass. mine was diagnosed in '07. I also have it in my feet. i havent had very much improvement but that doesnt mean you won't. im battling a lot more than the PN. I do get some relief from the shots, but the hands and feet still do what they want to do. also, i just saw the Neuro again this week and this time when my blood work came back, I HAD NO B1(THIAMIN). this normally happens in third world countries where there is famine and no food available..how ironic i have the problem because of a surgery i had because i enjoyed too much food....SMILE. i'll pray for u(hope i don't offend by saying that,if so i apologize)because ive been in the situaion awhile. hope you find some relief, keep your spirits up.
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Old 01-29-2010, 09:01 AM   #3
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Re: B12 deficiency & clumsy hands Neuropathy

Laurie, as you get your levels back up and the nerves begin to heal, you probably can get strength back in your hands with physical therapy. I had neuropathy from a spinal cord injury which caused my hands to be very weak, but after 8 weeks of physical therapy, almost all of my hand strength has returned. You'd be surprised how much working the right muscles can do.

 
Old 01-29-2010, 12:25 PM   #4
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Re: B12 deficiency & clumsy hands Neuropathy

Hi Laurie ,by reading your post it does sound positive if you have found some improvement already.
The numbess took the longest for me to heal, so try to be patient, nerve regeneration can take months to years, depends on how much damage there is.

Your b12 levels were extreemly low, I like mine to be at least over 1000, I know other neuropathy patients that are not happy unless their serum b12 levels are are around 2000, there are no toxic levels of b12, it is completely safe, some japaneze neuropathy experts give their patients mega amounts of b12, like 40,000 mg daily. they say any serum b12 level of under 500 is very suspicoius of b12 deficiency.

good luck

Aussie

 
Old 01-29-2010, 11:24 PM   #5
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Re: B12 deficiency & clumsy hands Neuropathy

Hi Aussie,

Did you have any motor function issues with your hands, awkwardness etc? This is the most disturbing part for me. The numbness in my feet does seem to be alittle better, and the weakness too, I was so weak when this first came on I could not walk into the ER. Now I can walk a mile and jump on my trampoline easily. Still however my hands are bumping into things and my wrists feel weird. Especially in the morning. I have been prescribed Ativan, and it makes it better, but I hate taking meds. Especially ones that are hard to get off of,

Aussie I have heard you have had success in improving and healing your nerves. How have you done it? Did you work out? What symptoms got better first, and how are you now?

I've been supplementing, doing acupuncture, B12 shots and drops. I will do sun therapy. I stopped prevacid. Eating whole foods.

We can learn from each others experiences. If you have been successful I'd love to know your methods.

Thank you Aussie.

Laurie

 
Old 01-29-2010, 11:25 PM   #6
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Re: B12 deficiency & clumsy hands Neuropathy

Quote:
Originally Posted by Laurie S View Post
Hi Aussie,

Did you have any motor function issues with your hands, awkwardness etc? This is the most disturbing part for me. The numbness in my feet does seem to be alittle better, and the weakness too, I was so weak when this first came on I could not walk into the ER. Now I can walk a mile and jump on my trampoline easily. Still however my hands are bumping into things and my wrists feel weird. Especially in the morning. I have been prescribed Ativan, and it makes it better, but I hate taking meds. Especially ones that are hard to get off of,

Aussie I have heard you have had success in improving and healing your nerves. How have you done it? Did you work out? What symptoms got better first, and how are you now?

I've been supplementing, doing acupuncture, B12 shots and drops. I will do sun therapy. I stopped prevacid. Eating whole foods.

We can learn from each others experiences. If you have been successful I'd love to know your methods.

Thank you Aussie.

Laurie

 
Old 01-29-2010, 11:30 PM   #7
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Re: B12 deficiency & clumsy hands Neuropathy

When you hands were weak, were they bumping into things, and clumsy? I also have a cervical spine injury, and I am going to find out if that has any bearing on this symptom, or if it is the B12 deficiency damage alone. Thank you for your response and encouraging words. How did you work out your hands?

 
Old 01-30-2010, 10:06 AM   #8
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Re: B12 deficiency & clumsy hands Neuropathy

Laurie, I still have some problems with dropping things, but when my hands were the weakest, I couldn't turn a doorknob, or use several of my fingers to press down, like in typing. In therapy they had me use rubber bands to use as resistance to press up fingers, (spread out the fingers, then lift up individual fingers. This was really the hardest. I used weights, starting with very light, to build wrist strength, and used a spring device to increase grip strength,Also some things like rolling velcro tubes with my fingers on a board for increasing flexibility, as well as kneading therapy putty.
Now I can type with all fingers and can open doors and jars much better. I still drop things occasionally, but if I concentrate when holding something, I do much better. I know that without the exercises, I wouldn't have regained much back. All the best
Kay

 
Old 01-30-2010, 01:11 PM   #9
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Re: B12 deficiency & clumsy hands Neuropathy

Laurie, mine started in my feet and then rather quickly went up my legs and I was just starting to get trouble with my hands when before starting treatment, they resolved pretty quickly [ thank god ].

An emg picked up that i did have some large nerve damage, but I was mostly troubled with small fibre nerves, severe burning, electric like zapping feeling, pain & numbness.

Hand problems can come from the cervicle spine, same as legs/feet can come the lower spine, so I think it would be worth while checking out that possibility, its not unusual to have dual causes of neuropathy.

good luck
Aussie

 
Old 01-30-2010, 03:37 PM   #10
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Re: B12 deficiency & clumsyy hands Neuropathy

Quote:
Originally Posted by coocoo4cocoapuf View Post
hi laurie,
I,too, have idiopathic PN. i give myself the injections also. the sublingual didnt work as a result of my gastric bypass. mine was diagnosed in '07. I also have it in my feet. i havent had very much improvement but that doesnt mean you won't. im battling a lot more than the PN. I do get some relief from the shots, but the hands and feet still do what they want to do. also, i just saw the Neuro again this week and this time when my blood work came back, I HAD NO B1(THIAMIN). this normally happens in third world countries where there is famine and no food available..how ironic i have the problem because of a surgery i had because i enjoyed too much food....SMILE. i'll pray for u(hope i don't offend by saying that,if so i apologize)because ive been in the situaion awhile. hope you find some relief, keep your spirits up.

 
Old 01-30-2010, 03:40 PM   #11
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Re: B12 deficiency & clumsy hands Neuropathy

So when you say your hands do what they want. Is it pain and numbness only, or are your hands clumsy and maybe jittery? Mine don't seem to know exactly what position they are in. Its better if I take Benzos, but I hate to take drugs.

 
Old 01-30-2010, 10:15 PM   #12
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Re: B12 deficiency & clumsy hands Neuropathy

Hi Minstrel 2,

In order to get back hand function, did you also have surgery on yout spinal cord injury, or did you just do therapy?

 
Old 02-01-2010, 10:35 AM   #13
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Re: B12 deficiency & clumsyy hands Neuropathy

CooCoo, When you say your hansd and feet do what they want, what do you mean? Do you take any medications that help?

Laurie

 
Old 02-01-2010, 02:30 PM   #14
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Re: B12 deficiency & clumsy hands Neuropathy

Laurie,
I had surgery in June 2008. They did an anterior cervical discectomy and fusion (ACDF) at C7-T1 level with donor bone and titanium plate. This stabilized my spine. I still have neuropathy symptoms, such as parasthesia (stinging, itching, numbness, burning) in both arms, hands, legs and feet. The symptoms vary in intensity and frequency. I still expect to get some better since it can take up to two years. I take supplements Benfotiamine, Fish Oil, Acetyl L carnitine, alpha lipoic acid, multi vitamin mineral, glucosamine, chondroitin, calcium and extra Vitamin D. I am taking no medication for the neuropathy. I take an occasional Alleve for low back pain. I still have balance problems, but am much better than before surgery. I continue to exercise as much as I can in the warm therapy pool. That seems to be the most beneficial. Hope you find out all the things you need to know.
All the best.
Kay

 
Old 02-02-2010, 09:27 PM   #15
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Re: B12 deficiency & clumsyy hands Neuropathy

Hi Laurie,
I mean I could be holding a glass and all of a sudden my hand would just let it go, I could be attempting to open a medicine bottle and giving it everything I got, but the hand is barely moving, my the latest thing is I can be walking and all of a sudden Im on the ground. Its like your walking normally and when you go to put one foot forward it decides it doesnt want to go forward. It just won't move, but my mind is saying go..I found out they have to be on the same accord or you end up being on the ground. There are times when Im typing and its like my fingers are froze. I actually have to wear gloves to bed at times bcuz they get so cold. I was diagnosised with Fibro, Neuropathy in 2007, well now one of my hands turns blue when it gets cold. OMG!! Im having another nerve test next week. Also,I can be driving and holding on to the stirring wheel becomes a problem. I had Neurotin for awhile, but it didnt work for me, but I know of some it has helped. I would definitely stick with the Neurologist. :-)
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