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03-27-2015, 05:07 PM   #1
Steveyank
 
Join Date: Mar 2015
Location: Deer park, New York

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Numbness

Has anybody experienced numbness in their feet, legs and hands. Pretty much distributed evenly. Have had crohns over 10 years. Was on Humira, then switched to entyvio. Going on 6 mp soon. They pretty much ruled out MS. Either b-12 deficiency or copper deficiency they think. Had both replaced. Still have numbness. Getting very frustrated.
03-28-2015, 12:24 AM   #2
afidz
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It could be a pinched nerve or nerves somewhere. I know Jennifer has trouble with one (or both, I forget) of her hips and thigh being numb and it causes her a lot of pain from time to time. Have they done any type of nerve testing?
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03-28-2015, 12:55 AM   #3
Jennifer
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Hi Steveyank and welcome to the forum. What's your B12 do you know? Is it just numbness or do you feel any other sensations (possible RLS?)? When did the numbness start (after any particular medication)? If all tests show that it's not related to a deficiency or another health problem then you may want to have you spine checked to see if maybe your spinal cord is being compressed somewhere (that's the issue I have that afidz mentioned, I have a few bulging discs in my back).

I'm going to tag David to see if he knows of any other vitamin deficiencies that may be causing the numbness. Keep us posted.
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Diagnosis: Crohn's in 1991 at age 9
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-28-2015, 08:41 AM   #4
Steveyank
 
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Hi. Thanks for the replies. I have seen four neurologists and the all say it can't be from a pinched nerve. The lowest my b12 ever was that I have a record from is 264, which is still borderline ok. My copper and zinc were definitely low. I had copper infusions a few weeks ago. I also had an EMG, which was normal. I had an Evoked potential test and it was abnormal. An MRI showed lesions on the cervical and thoracic spine. Again they pretty much ruled out MS. The neuologists thinks it was some sort of nutritional deficiency. I am on all kinds of suppplemements to get all my levels up. I read that if you catch the deficiency too late the neurological symptoms may be irreversible. I appreciate your feedback.
03-29-2015, 10:00 AM   #5
David
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The numbness you're experiencing is peripheral neuropathy. Our wiki entry on it located here: http://www.crohnsforum.com/wiki/Peripheral-Neuropathy lists other vitamin deficiencies (and over-abundances) that can cause it. Obviously, B12 deficiency in those with Crohn's is the most common.

How long have you had the numbness and how long have you been on the B12 supplementation and how often have you been getting it?
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03-30-2015, 05:02 PM   #6
Tuff
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Have you been on antibiotics? I got peripheral neuropathy from Flagyl.
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Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
03-30-2015, 08:03 PM   #7
Steveyank
 
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I've has the numbness for over a year now. My Emg's have come back normal. The neurologist says I have myelopathy, which is the nerves affecting the spinal cord. Possible due to a b12 deficiency or copper.
03-30-2015, 09:21 PM   #8
David
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My understanding is it can take quite awhile for severe degeneration to heal and in some cases, it never does Hopefully you're in the former.

Are they giving you regular injections of B12 and monitoring your level to make sure the interval is optimal for you?
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