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04-23-2014, 08:41 AM   #1
james's mum
 
Join Date: May 2013
Location: Sydney, New South Wales, Australia

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Pins,needles & pain

Hi everyone,
it's been a while since I have been on, James has been doing pretty good most of the time over the last 6 months or so.

My question is has any one else experienced pins and needles with pain. This has been happening for the last 5 days, mostly when doing some sort of activity, but now at times when just sitting. They seem to be mostly in the chest and back but at times in his legs, feet and face. James is on Imuran and Infliximab. Spoke to his GI and she doesn't have much of an idea, but going back to see her next week.

Have been doing a bit of research but nothing jumping out. Any thoughts would be appreciated.

Thanks
James's mum
04-23-2014, 09:14 AM   #2
Tesscorm
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Join Date: Jun 2011
Location: Ontario

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Sorry, no advice... my son in on remicade but has never mentioned this. Hopefully, someone else will be along soon with some ideas on this.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-23-2014, 11:27 AM   #3
DanceMom
Senior Member
My daughter has described something similar in her arms/legs, mostly after exercise as well. The Rheumo believes it is claudication. It is very bothersome for her and upsets her when it gets intense. Maybe look up "claudication" and see if that seems to fit.
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
04-23-2014, 05:25 PM   #4
Catherine
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Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Maybe low B12?
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-24-2014, 12:06 PM   #5
CrohnsKidMom
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Join Date: Mar 2013
Location: (Canada), Nova Scotia

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My son often complains of his feet or legs "going to sleep". Our GI didn't seem too concerned about it either. I just chalked it up to another one of those weird Crohn's things, but I sometimes wonder if I should push for further investigation.
04-24-2014, 08:27 PM   #6
james's mum
 
Join Date: May 2013
Location: Sydney, New South Wales, Australia

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Just an up date, took james to see doctor at the hospital yesterday. Done blood tests and checked his reflexes then said we have no idea. Apparently they spoke to GI and neurologist who said we don't know. They say they can't find any side effects from the medicine that fit. Come back on Wednesday and we will see what happens. We can assure you it is nothing serious.

My question how can they say this when they have no idea what is causing it. It is now not only when doing some sort of activity but also while sitting. Maybe it is nothing at all, but we intend to get some sort of answer. And yes I agree, we should push them more or they just seem to fob you off.

James's mum
04-24-2014, 10:14 PM   #7
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
As catherine has alluded to…has he had his B12 tested?

Does your son have disease in his terminal ileum?

Unless a symptom can be easily pigeonholed then unfortunately it is not uncommon to get the response…we don’t know.

Dusty. xxx
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Mum of 2 kids with Crohn's.
04-25-2014, 07:54 AM   #8
DanceMom
Senior Member
We seriously went through the exact same thing. We saw the Neurologist who did what he considered a "thorough exam". When he couldn't figure out what was going on he told me it was time that I considered that maybe her issues were psychological. That's when I lost it on him. I'm sorry that you aren't getting answers either!
04-26-2014, 12:15 AM   #9
james's mum
 
Join Date: May 2013
Location: Sydney, New South Wales, Australia

My Support Groups:
Thought the B12 was being check but have discovered it hasn't been checked for 12 months, so taking him on Monday for a blood test.
Dance mum I would love to hear exactly what your daughters symptoms were, low long it lasted and if it is still happening.
04-26-2014, 02:58 AM   #10
DanceMom
Senior Member
And A's B12 is normal, as was her lactic acid labs.
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