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Crohn's Colitis and MS anybody?

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Crohn's Disease
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Posted 8/24/2009 4:35 PM (GMT 0)
As I write this, I have just returned from my Rhumri. After asking the usual questions and doing the neurological exam, he looked at me and my husband and said "when was the last time you had a brain MRI?" It was about a year a half ago from the neuro who is always on top of my migraines. So I asked him why another MRI? Well he said and I quote" there is a higher incidence of MS among us Crohnies. So I tell you guys I haven't heard another word since he mentioned MS. Of course, I CAN NOT have something else go wrong with my health especially MS. And yes, he is only looking but as I said, would you even want another MRI if you didn't suspect something was wrong, such as MS. So Wednesday morning, I am having another MRI, and this one will determine if I now have MS. All I can now visualize is a wheel chair with me in it and my husband pushing me. I am just processing this and I know I am being quite melodramatic but it need a bit longer to become positive. I just hope that this is something else. Perhaps somewhere out here who can help me with some soothing words. Thanks everyone for listening to my rant.

Darilyn
Posted 8/24/2009 5:26 PM (GMT 0)
Crohnies do have an increased risk of developing a number of autoimmune diseases, including MS. Some of the linkage between Crohn's and MS specifically comes from usage of the TNF-blockers like Remicade and Humira. Here's a link to an article with more info:http://www.webmd.com/ibd-crohns-disease/news/20050901/ibd-linked-to-risk-of-multiple-sclerosis

I wish I had more comforting words for you, as I know how hard it is when you are told something else might be wrong on top of everything else and then they make you wait to find out, but try to relax and not obsess over the possibilities. They can eat away at you, and at the moment you have no control over the future. Crohnies are 1.7 times more likely to develop MS than non-IBDers, so it's only a small increase.

Please keep us updated!
Posted 8/24/2009 6:51 PM (GMT 0)
Hey Darilyn,

My best advice to you is to try to stay in the moment. Don't worry about the what if's, and lets wait and see what the test shows first before we get ourselves all worked up. It could be the test comes back negative. Sending healing prayers and thoughts your way.

Hugs
Gail*Nanners*
Posted 8/27/2009 2:04 AM (GMT 0)
Darilyn,
I feel for you! My Dr. told me the other day that auto-immune's come in two's... usually. I felt the same way...."Great what else can I possibly get now"! I have alot of trouble with swelling. Getting tested for RA now.:(
Here's the clincher though...my brother who is 15 months younger than me has MS. He was diagnosed at 24. He was in the Navy as a Nuclear Submariner. It was a blessing because he also was in the Gulf War and got to get out! He recieves 100 percent disability throught the serivce. He's now 40. Yes, in a wheelchair since 35. I have helped him along the way and have to say that yes, wheelchair isn't fun but...he doesn't experience any pain!! He's happy all the time! It's part of the disease. Uphoria!!! I used to think... He had the bab auto-immune disease ...and now I think Crohnes is worse at times! Primarily because of pain. Isn't that what it usually comes down to.....pain?
MS is really difficult to diagnose too. Remember everyone has scaring of the brain...that's what his neuro told him. Usually it's flares and your "signs" that will diagnose you. There are many different kinds of MS also...I know it's difficult but maybe read up on it. I'll be praying for you to accept any answer you recieve.
Posted 8/28/2009 5:11 PM (GMT 0)
Dear Flowery, thank you so much for your reply. You really have helped me. I still haven't gotten an answer back so I don't know yet. To be perfectly honest, I haven't even looked up any information on MS because I have been to scared to up to this point. I have gotten to the point that I do realize that all this pain is for a reason and as my husband keeps reminding me, it isn't cancer and there are many more people suffering far more that I. I know that he is correct. Thank you so much for your kind thoughts. Have a great weekend. Please know that you and your brother are in my prayers.
Posted 8/29/2009 12:35 AM (GMT 0)
Hi,

PLEASE HEAR THIS!!! Crohn's Disease can cause lesions in your brain, that mimic the lesions in multiple sclerosis. I had the same exact issue a couple of years ago. I was having more headaches than usual, and my internist ordered an MRI which came back as "possible MS." There were 9 lesions in my brain. (I also have a history of non-classic migraine.) Anyway, they sent me to the MS Center at Johns Hopkins where they ran every test possible and the doctor there said they've seen several occasions of Crohn's patients who had Crohn's lesions in their brains, that mimic MS. Apparently all autoimmune diseases can wreck havoc on any body system, especially if chronic inflammation is involved. They ruled mine out with a lumbar puncture and evoked potentials test. Please don't take a diagnosis based only on an MRI. They need to conduct all tests! If all tests come back positive, then you will know what you are dealing with. Good luck to you and hopefully it's just the silly old Crohn's again.
Posted 8/29/2009 4:11 AM (GMT 0)
I supposedly have Crohns as well as MS. I just in the last few days learned that Crohns can minim MS. I knew Celiac could Mimick MS, but not Crohns.

My lumbar puncture did come back positive for oligodendrocyte bands, unlike the poster above me.....however, please keep in mind that there is no "lumbar test for MS". There is a test that tests for a certain kind of inflammation, but a negative lumbar puncture does not definitely rule out MS and a positive lumbar puncture does not definitely diagnose MS, even when there are brain lesions by MRI.

I wonder if my MS symptoms would clear up with Methotrexate even without the Avonex? I am scared of Tysabri, but that would at least treat both conditions.
Posted 8/31/2009 4:13 PM (GMT 0)
Dera Vandy and Nick, thank you both for your input. I am still waiting to hear my test results. The waiting is the worst part of all of this. Your posts are a great help to me as I need to factor in the fact that I have had both Crohn's and Colitis for over 30 years. Regardless of the MRI results I will still be going to see an MRI Specialist because as you both say, every aspect of all my diseases must be ruled out and I wish it was just the Crohn's and Colitis. I will keep you guys abreast of what happens and thank you both again for you help.

Darilyn
Posted 9/1/2009 3:27 PM (GMT 0)
Hi Darilyn,

I have had MS for 11 years. Over the last few years I have gotten worse with my symptoms in that I am in alot of pain and have trouble with falling, bladder ect. However rest assured that not everyone who has MS will end up in a wheel chair. You MUST keep a positive attitude as that will be the only thing to keep you going. You have to try to control the disease and not let the disease control you!

I also found out yesterday that I may have Chrons disease. My sister and her daughter both have Chrons as well. I am going through the same questions as you.... how many health issues can I have! I was also diagnosed as being diabetic about 2 weeks ago as a result of the steroids I take for MS. I am 41 and stopped working about 2 years ago due to the MS. But I am not in a wheel chair.

So the only advise I can give to you is make sure you go to a doctor that deals with each disease every days. (specialist) I am lucky to be near the Cleveland Clinic it will seem like you have doctors appointments every other day but in the long run you will benefit from it. If you ever have any questions about MS I would be happy to tell you about my own experiences although every person who has it is different.

Good Luck to you and stay positive and strong!!
Posted 9/1/2009 8:44 PM (GMT 0)
Just a couple of bits of overlap between different conditions - Crohn's can cause a migraine-like headache condition - maybe via those lesions that were observed?

Diabetes can cause a Crohn's-like condition as a result of poor blood sugar control resulting in damaging the nerves regulating peristalsis.
Posted 9/2/2009 6:46 PM (GMT 0)
To All My Buddies, I actually have just found out that it is NOT MS. I seem to have developed a rather large and what sounds pretty hideous to me, a persistent abnormal T2 left sphenoid sinus cyst. There were no signs of MS but this large sinus cyst has grown since the last MRI in September 2008. Since I am blessed to have a brother that is the director of the Jackson Memorial Hospital Critical Care Unit as well as an Assistant Professor of Surgery at the Hospital, in Miami FL., I am going to get copies of the MRI's and bring them to him and he will give then to the "powers that be" to read them and see what needs to be done. I can deal with anything as long as it's not MS. Thank you all so much for helping me through this terrible time. I still have no answers as to why the Rheumi thought my symptoms mimicked MS but I suppose next time he will explain his thinking to me. To all of you with MS you are in my prayers. Thanks again.

Darilyn
Posted 9/2/2009 9:31 PM (GMT 0)
Yikes. I hope you are able to get through this.

A cyst is way better than cancer though.
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