peripheral neuropothy

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westat
Regular Member


Date Joined Jun 2008
Total Posts : 165
   Posted 2/21/2011 1:46 PM (GMT -6)   
Just wondering if anyone else has been diagnosed with Peripheral neuropothy caused by the immflamtion of Crohn's?
 
I was just diagnosed with this due to lack of sensation and constant numbness in my hands and feet.  The dr believes that the damage is due to Crohn's or more generally autoimmune disease.  And because of this being the cause there is no chance of reversal of symptoms.
 
Curious if this is a new thing, maybe from the new drugs (TNF blockers) being used, or if it really is the Crohn's causing it.
 
Any ideas anyone?

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/21/2011 2:01 PM (GMT -6)   
Mine is caused by low VitB12 levels. Maybe this is what you doctor meant by it being caused by
crohns. Most of us have absorption issues, thus making it difficult to absorb vitamins, especially B12.
If I were you you, I would ask for you levels to be checked.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

westat
Regular Member


Date Joined Jun 2008
Total Posts : 165
   Posted 2/21/2011 2:18 PM (GMT -6)   
All my vitamins, etc were checked to rule those out first.  I take B12 monthy by injection and this keeps it in the normal range.  The dr actually thinks it is the immflamtion causing it.  Not any deficiencies.  I actually have nerve damage according to my nerve conduction tests.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/21/2011 2:24 PM (GMT -6)   

I'm the same, all levels are good, but my feet are like 2 ice blocks, evan in summer. I really feel it's combo, of dehy. and absorbtion, and just having cd. My right hand at night in bed falls asleep, or goes numb, I'm not sure, not every nite, 4 nights aweek.

AG


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6798
   Posted 2/21/2011 3:34 PM (GMT -6)   
I developed peripheral neuropathy BEFORE I was formally diagnosed with CD. My vitamin levels were all normal, I am not diabetic, nor have any other disease that would cause PN. My GI and neurologist both said that my small fiber nerve death in my feet was caused by the inflammatory processes of Crohn's.

The spread of my neuropathy stopped when I started REmicade and it got my guts under control. I am still taking an anti-TNF, Simponi. It hasn't caused issues with my neuropathy.

If you have more questions, I'd be happy to answer them since we seem to be in a similar boat.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

dfdavedf
Veteran Member


Date Joined Jan 2010
Total Posts : 1002
   Posted 2/21/2011 4:25 PM (GMT -6)   
I had PN also. It showed up as drop foot. The Neurologist thought it was Crohn's related. My GI was frightened it was all the CD drugs so stopped everything. I was prescribed an expensive form of B12 designed to address this by the Neurologist. And thanks to the big guy, it did address and I am 100% now. My conduction test showed a high level of impairment but this was never described as permenant.
My GI has slowly and cautiously been putting me back on the CD meds. 
Dave 
Pentasa (1,500 per day for the last 4 months), Vit D and B complex, fish oil and SCD vit. Entocort (9 mg). SCD since Nov 2010. Amitriptyline for sleeping
Feeling good, almost every day!

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 2/21/2011 5:51 PM (GMT -6)   
Well my goodness, you learn something new everyday. I've never heard of that, it's very interesting!!

I hope you find something to help soon. I take B12 shots every 2 weeks and my levels still show a
little on the low side. Mmmm!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

PV
Veteran Member


Date Joined May 2006
Total Posts : 1143
   Posted 2/21/2011 9:52 PM (GMT -6)   
Are you on an anti-tnf agent? Medications like Humira/Cimzia/Remicade can cause central and peripheral nervous system problems. I think they need to monitor you to see if this a side effect of the meds.

Sorry don't have much advice other than that. My husband also got foot drop after a massive flare up (but all his numbers were fine). He had lost a lot of weight, and had managed to damage the peroneal nerve bundle in the leg. Over time, as his nutritional status got better, and with PT, he's got about 90% of his movement back, and the foot drop is history. At the time he was followed by a neurologist who monitored him for progress and also got brain MRIs to rule out central nervous system issues.

PV

westat
Regular Member


Date Joined Jun 2008
Total Posts : 165
   Posted 2/22/2011 6:36 AM (GMT -6)   
I find this all so interesting.  My symptoms started after starting Remicade.  So now I am left with wondering if it is crohn's or remii causing this.  It is amazing how many things within our bodies that have nothing to do with our bowels are affected by crohn's.
I am having a resection in a few weeks.  I am hoping like crazy that this one will get me a little remission and maybe the PN will settle too.  From what I read from you guys it looks like it might. :)
 
Thanks for your input everyone.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/22/2011 9:19 AM (GMT -6)   

mine started before I started any med's, I was med free. Thank god Ides put a name on it for me, I've never addressed this to gi. But I did to my gp and she never said a thing about pn. It seems there is nothing you can do for it, except wear wool socks( I do). We can go to mars without a problem. cure pn, no way, thats too much, too expensive. confused nono

AG


TearBear
New Member


Date Joined Dec 2009
Total Posts : 6
   Posted 2/22/2011 10:50 AM (GMT -6)   

Hi all,

I also have peripheral neuropathy.  I started developing it last March while I was on Flagyl.  Stopped taking it after 3 months of 500 mg 3x a day.  Started with finger tips then feet.  I take a B-12 shot once a month, plus 1000 mg B-12 orally, and just started taking a B Complex vitamin and 50 mg of nortiptyline HCL with a tylenol at bedtime.  My fingers are just starting to feel better, but not the feet.  I was diagnosed with Crohn's in November, 2009.  It was a hard 2010, but am just now feeling like my old self.  Except for my feet.  I also am on Remicade, for 10 months now, and it has helped with my rectum issues which was the start of my problems(abcess), also 500 mg of Pentasa, prenatal vitamin and 50 mg of Imuran.  The neurologist isn't sure if the neuropathy is permnant or not, and that we can go higher on the Nortipyline dose.  It is very frustrating.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 6798
   Posted 2/22/2011 5:55 PM (GMT -6)   
My neuropathy incident happened in the early 70s when I was on Flagyl for an unrelated to CD problem. I got neuropathy in my hands almost immediately. It took almost four months after going off the med for it to resolve. I tried Flagyl for an episode of diverticulitis a couple years ago and within 3 days got symptoms in my hands. Since then I refuse all offers of Flagyl. Can't handle the tingling and burning hands.
Moderator Crohn's disease, Osteoarthritis and Irritable Bowel Forums

CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 2/23/2011 9:28 PM (GMT -6)   
your b-12 or iron may be low. get some blood work. i was experiencing recurrences of this off and on for a year or more until i found this out. so glad i did. i'd get restless leg syndrome at night too which totally sucked cos i couldnt sleep.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07
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