06-11-2013, 09:28 PM   #1
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Mehita's Avatar
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Location: Minnesota

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Weird Joint Feeling

DS has been on a low dose of Aza for one month. About two weeks in he said his knees and ankle (two different occasions) felt funny. Not a pain, but more like when your hand falls asleep minus the tingly prickles. Just a "weird" feeling. Both times it last about an hour and then was gone.

Today, he mentioned his knee felt funny again and again, it lasted about an hour.

I did mention this to his GI at his appt yesterday and he didn't know what to think of it.

Any thoughts? I don't think it's arthritis?
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
06-11-2013, 09:41 PM   #2
my little penguin
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Has he seen a Neuro who can do a complete Neuro examine to make sure
The nerves are working the way they should.
When DS had arm tingling
His ped did a quick Neuro
And later his neurologist did one just to be safe .
Hope its nothing but Aza can cause neuropathy in the limbs as. Side effect as far as I know
DS - -Crohn's -Stelara -mtx
06-11-2013, 10:01 PM   #3
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Mehita's Avatar
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Thanks, MLP. Think it's something to take a wait and see approach on?
06-11-2013, 10:14 PM   #4
my little penguin
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Not sure on your kiddo
But for DS the Neuro wanted him seen by any md ASAP
So the ped agreed to do a basic Neuro examine
06-11-2013, 10:28 PM   #5
Join Date: May 2013
weird...my 13 year old girl started soccer conditioning on Monday and she complained of not be able to feel her left foot while playing soccer...like it had fallen asleep (needles in it)...she was ok today though
06-12-2013, 06:45 AM   #6
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
I agree with mlp Mehita, have your lad checked out for neuropathy.

@saddad -

Where is your daughter's Crohn's, assuming she has CD, located?

Has she had blood levels done for B12?

Dusty. xxx
Mum of 2 kids with Crohn's.
06-12-2013, 07:20 AM   #7
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I just put on my thread that Grace said her (leg/joint?) felt weird.
She's 4, so it's hard to tell the real feeling.

Out of pure curiosity, what is involved in a Nero exam?
Plus how can they know if you have this?

Sorry Mehita, not trying to hijack.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
06-12-2013, 07:26 AM   #8
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Our kids seem eerily similar Mehita, lol. Yesterday A started complaining that her shoulder felt weird. She first mentioned it when we were at the lab so I thought maybe she was just tense. But last night she couldn't get her shirt off and needed help. Said it felt sore and "wouldn't move right". Somehow she was able to manage doing double back handsprings in acro class though, lol. For now I'm chalking it up to achy joints/muscles from tumbling, but we'll see. She has some friends over today to work on stretching and dance skills (we have Nationals in 2 weeks!!) so I'll see if she has complaints.
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
06-12-2013, 07:54 AM   #9
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Sorry Mehita no advice but I would run it by ped and see what they say.

Dancemom: dancers and shoulder injuries aches etc are very common. The over use of the arm up and down and up and down causes a bursitis type thing...forget the real name. If she is training hard and tumbling that could be it. Especially when they are growing this happens a lot. Not serious...just some o/t exercises needed and once you go once and have the exercises as soon as she feels it creeping in again she can start the exercises and head it off at the pass. Of course I didn't have IBD so my dx's were pretty clear cut but dancers abuse their body to no end and I have been to plenty of PT O/T and chiropractic offices. Good Luck at Nationals!
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-12-2013, 10:15 AM   #10
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CrohnsKidMom's Avatar
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My 8 yr old son has also complained from time to time of a 'weird' feeling in his hands or feet. Not really 'pins and needles', or pain, just a weird feeling. We have a GI appt next wk. Will try to remember to mention it and see what the doc has to say. FYI, my son's CD is in the jejunum of his small intestine. He is on 15mg Prednisone, just started wkly MTX injections last wk, and had a few wks of Imuran in May, which he ended up not being able to tolerate.

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