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Crohn's Disease
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Posted 1/9/2008 7:57 PM (GMT 0)

Hi everyone,

 

I’m a newbie here, I’ve been lurking for a couple of months reading everyone’s stories. I’ve been living with Crohn’s disease for approximately 8 years, I was diagnosed in 1999. I’ve only had 2 flare ups since diagnosis so I am very lucky but I’m still very scared what long term prognosis will be. Are Crohn’s patients more susceptible to other autoimmune diseases like MS and Endometriosis?  I’m worrying right now because I have these weird tingling sensations all over my body and noticed that MS can cause these. Has anyone heard of Crohn’s patients also having MS?

Posted 1/9/2008 8:00 PM (GMT 0)
Hi and welcome researchnut :)

I googled crohn's and ms and found this link....

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=1556407&dopt=AbstractPlus

:)

Posted 1/9/2008 8:04 PM (GMT 0)
thanks pb4 so I guess it's possible but rare :(
Posted 1/9/2008 9:03 PM (GMT 0)
Well lets just hope this is not an issue you will be dealing with...have you gone to your GP and talked about your concerns with the ms?

:)
Posted 1/9/2008 9:32 PM (GMT 0)
Yes, I hope not. I made an appt with my Primary Doctor. I wasn't sure who to really contact. Hopefully she can ease my worries.
Posted 1/10/2008 3:29 AM (GMT 0)
Are you on or have you taken Remicade?
Posted 1/10/2008 3:30 AM (GMT 0)
What about your B-12 levels?
Posted 1/10/2008 6:11 AM (GMT 0)
It is possible to have both Crohn's disease and some other autoimmune disease. I have had CD for 30 odd years and am now being diagnosed with "probable MS'. I know that there are people in the MS forum who also have CD . I sure hope this is not the case with you. ...Good luck.
Posted 1/10/2008 2:18 PM (GMT 0)
I have Crohn's and AS and had symptoms of MS that included tingling and numbness of hands and feet, hand tremors, eye pain with movement. leg weakness in heat. The MRI was clean and the neurologist (MS specialist) diagnosed it as nerve inflammation from the Crohn's. I also eventually determined that the 9 mg doses of Entocort EC were the cause of the hand tremors. He said it is very rare for Crohn's with MS. Best of luck.
Posted 1/10/2008 3:34 PM (GMT 0)
I have Crohn's and fibromyalgia. The fibro causes numbness and tingling in my hands, arms, shoulders and sometimes feet. It is def something you should talk to your family dr about and get it looked at. GOOD LUCK!
Posted 1/10/2008 3:43 PM (GMT 0)
Welcome ResearchNut!
I can't be much help with your questions regarding CD leading to other autoimmune disorders, but I did want to say welcome aboard! It's always great to chat with a new member. You are very lucky to have been handling your CD so well for so long, sorry to hear about the new symptoms you're experiencing. Talk to your GI, it might be time to run some tests and figure out what's going on. Please take care and let us know if you have any other questions or just need to vent! We're here for you!
Posted 1/10/2008 4:14 PM (GMT 0)
I have Crohns and Scleritis of the right eye, both auto immune diseases. I'm blind (20/200) in my right eye. My left eye is 20/15 but has Scleritis in it as well.
There are two theories: One that says they are realated and the other is I'm susceptable to autoimmune issues as I also have Asthma and Arthritis.
My Sclereitis, however serious it maybe is so rare it puts me into the <1% category. The Scleritis is being treated with Remicade at monthly intervals.
Dave D
Posted 1/14/2008 2:18 PM (GMT 0)
Thanks to everyone who replied. I went to my doctor on Thursday to discuss it with her but she said the tingling could be from many things and that it was unlikely it was MS. She sent me to have an xray done so I'm just waiting on the results. Hopefully that comes back ok. She did tell me a few years back that I had signs of arthritis so I guess maybe that could be the cause.

 

Post Edited (ResearchNut) : 1/14/2008 8:04:51 AM (GMT-7)

Posted 1/14/2008 3:53 PM (GMT 0)
It's important to get your B12 levels checked as tingling in the fingers/toes is often an indication of low B12 levels and if it's not looked after then it can turn quite serious with irreversable nerve damage.

:)
Posted 1/14/2008 4:06 PM (GMT 0)
My doc checked my B-12 levels last month becuase I told her I was trying to concieve. I had been taking a Prenatal vitamin, extra iron, and extra b-12. She said my B-12 stats were way too high. So I went off of them. Now I'm only taking the Prenatal, Extra Calcium, and iron. Do you think too much B-12 could of caused the tingling? 

Posted 1/14/2008 4:07 PM (GMT 0)
I don't know, I only know that not enough can cause tingling...did you mention the tingling to your doc?

:)
Posted 1/14/2008 4:26 PM (GMT 0)
Yup, I told her last week, she mentioned they did check my B-12 levels and that they were too high, so I stoped taking my supplement. Right now I'm just waiting on my x-ray results.
Posted 1/14/2008 4:33 PM (GMT 0)
That's good that she's aware...you'll have to be sure to keep us updated since there are so many things that can be related to having CD that many of us are still not aware of, so definitely anything CD related is good to share...seems there are so many things that are connected that you wouldn't expect to be...it's an awful disease.

:)
Posted 1/14/2008 5:38 PM (GMT 0)
I'll definately let you guys know what I find out.
Posted 2/5/2008 6:07 PM (GMT 0)
I had a blood test once right after a B12 shot and it was very high, but according to the vitamin experts that is only what is circulating in the blood. It has to build up stores in the bone marrow etc. My next one was back to the low levels because I was due for a shot. And I also found you can't take too much B12, your body will dump what you don't need.
Posted 2/5/2008 6:14 PM (GMT 0)
BTW researchnut, what meds are you on? And is the tingling on both sides? Remicade made my peripheral neuropathy worse and I think humira is doing it now. I thought it may be entocort but have been off that for 3 weeks and I have worse sx since then.
Posted 2/5/2008 6:28 PM (GMT 0)
Yes, I'm going to ditto what tinglebell said; your body dumps what B12 you don't need and there is no toxicity with B12. At least that's what I've read from many sources recently. If this is true, it seems odd your doctor would say your levels were too high. Anyone else have this issue? I'm genuinely interested because I just started my son on a sub-lingual B12.
Posted 2/5/2008 6:53 PM (GMT 0)
I have had eczema for years, which I have heard is an autoimmune disease or reaction.  I also have had episcleritis of the eye off and on (more on than off) since June or July of last year, which is also an autoimmune reaction.  I have not been officially diagnosed with Crohn's or IBD but my internist believes I DO have one or the other and she said the episcleritis is somehow related to IBD.

I hope you are able to find out something soon--good news!  Best of luck and keep us posted! 

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