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Multiple Sclerosis and Crohn's Disease

:p:yfrown::shifty-t::cool:KAY WELL I WAS DIAGNOSED WITH CROHNS BACK IN 94 A FEW YEARS LATTER I GOT A DEMEROL SHOOT FOR STOMACH PAIN~NEXT MORNING I COULD BARELY WALK WENT BACK TO ER TO TELL THEM THEY HIT A NERVE OR SOMETHING ~TURNS OUT AFTER HAVING MRI I HAD MS...LONG STORY SHORT I REALLY HAVE TRIED HARD TO FIND SOMEONE ELSE THAT HAS BOTH OF THESE LOVELY DISEASES AS PUT TOGETHER THEY ARE VERY HARD TO TREAT:frown: SO IF ANYONE IS OUT THEIR THAT HAS EXPERIENCE WITH TREATING BOTH OF THESE DISEASES I WOULD GREATLY APPRECIATE YOUR FEEDBACK:thumright:AS I AM JUST FLONDERING AND NOT REALLY DOING ANYTHING THAT IS GETTING ME ON THE RIGHT TRACK HEALTH WISE~HAVE A GOOD DAY!:rosette1:
 

xJillx

Your Story Forum Monitor
Hi and welcome! I am sorry to hear you have both CD and MS.

Have you ever heard of LDN? It is used to treat both MS & Crohn's. It's not considered a traditional course of treatment, but there have been studies to show many have benefitted from it. Check out this website to learn more. Also, we have a Low Dose Naltrexone forum that you may want to visit.
 
julies-child, hello, it is good to have you as a member of the forum. That is too bad about having both of those diseases, I hope that you can find some good info here, and that you figure out the key to success in managing your dual diagnosis.
 
Hi Julies-child

Welcome to the forum! It's always scary to get such a diagnosis, especially when the symptoms come on so suddenly.

Yep, I have the gruesome-twosome. I was diagnosed with MS at 19 and at that time, I was told it was chronic non-remitting MS. But, despite the doctor's say-so, I was in remission for about 11 years. I was diagnosed with Crohn's at around 33. As Jill mentioned, LDN is something to consider. Both diseases do have some similar meds. Prednisone is used for both, as are drugs like Tysabri. Qualifying for drugs like Tysabri is a bit involved with their rules---you have to try other drugs before they'll approve you for Tysabri.

My last MRI showed that I have only one lesion, and so for now, my symptoms are being treated only with Topomax (I have tremors in my hands and neuropathic pain in my legs).

Have you met with a neurologist?
 
I forgot to mention---loads and loads of Vitamin D. Now that winter has set in and we don't get as much sun here on the island, I'm taking three times the recommended dose of Vitamin D. You might also want to consider fish oils, if you're not already taking those. These two things are beneficial for both diseases.

Kismet
 
::)thank's for your reply~nice to know their is someone out their going threw the same thing. I am aproved to go on Gilenya(knew drug that just came out in Sept) just haven't decided if I am going to as I am a little nervouse but if you wouldn't mind telling me about tysabia(spelling) i was on copaxone for 2.5 years and it stopped working as my last mri showed about 7 knew lessions~as 4 neuro and gi doc think gilyena will work for both but like most of the drugs it screws up yr imune system and i really want to get back to work well thanks for reply:tongue::tongue::eek:
 

Kev

Senior Member
One of the reasons I pushed my GI into trialing me on LDN was that my sister and a friend from college both were diagnosed with MS. In my research of LDN (for my Crohns) I was astonished to discover how many people were taking it for MS. Figured my going on LDN let me play guinea pig (or lab rat) and I could pass the info along to family and friends if it worked for me... Well, that was Nov of 2007, and it is still working for me and my Crohns. That's a pretty good track record for any med.. If you haven't heard of LDN before, I'd say it is very worthwhile researching it at the very least.
 
Welcome to the forum!! Something that I would do some research in if I were in your shoes, is the advances that have been made in stem cell transplants. Stem cell transplants are being used to treat and reverse the effects of multiple sclerosis. They are also being used to treat crohns. There are 2 types of stem cell transplants:

Autogulous - where they wipe out your malfactioning immune system, and then transplant your own immune system back into you - thereby "resetting/rebooting" your immune system.

Allogeneic - where they wipe out your immune system, and then transplant back into you a donor immune system - thereby replacing your own malfunctioning one.

If you would like to read more about this option, here is a link for you to start at:

http://www.stemcell-immunotherapy.com/

There is plenty of written papers and study results to read through, and it is certainly something that I would keep an eye on. Under the treatment section, we have a few members who have undergone this procedure, and shared their experience.





http://www.stemcell-immunotherapy.com/
 
ms and crohns

....What is LDN exactly? thanks for yr reply~ did u have any side effects with it? My other question was what stage is yr ms and crohns in hope u dont mind me asking.:eek2:i just really want to find one drug i can go on to treat both without worse side effects then the diseases themself!thanks~have a good day:ybatty:
 
Hi Julies-child

Check out the LDN section of the forum in the Treatment section of the forum (click on Low Dose Naltrexone). You'll find tons of knowledge from people who've tried it, including the (minimal) side effects.

As I've mentioned, my MS has been fairly stable the last four years (I had eight lesions in 2007, and my last MRI two months ago showed one lesion), and other than pain in my leg (and some balance issues) and some tremors in my hands when I'm tired, I've been doing relatively okay (I was quite debilitated when I was 19, so things seem fairly good in comparison -- no wheelchair, and I don't need to drink wine from a child's sippy cup...yay!).

My Crohn's had been really bad (severe), and I finally had my colon removed in May, and that has changed my life around.

Good luck to you -- trying to manage two chronic illnesses isn't easy!

Kismet
 
treatment for ms and crohns

:ylol2: thank you guys and gals for your replys!:smile: researched LDN lots and am going to talk to my Docs about it~just think it sounds the complete opposite of what research is saying:eek:meaning they are trying to turn are immune systems off and LDN seems to be putting it in over drive? my brother in law has pancreatic cancer and if he is able to try it well on pain killers he might just do that but he definatly can't if you cant be on meds with it. Thank you so much fo the reply .:smile::smile: This ALLOGENEIC~ sounds good for me if they would let me do it as my immune system it totally screwed and I would love to get a knew one~thanks for the post~hope everyone is happy and healthy:)
 

Jessi

Moderator
I'm glad you're looking into your options. My dad has MS, and I have UC with possible MS. Tysabri (Natalizumab) is a biologic that would treat both diseases. It's a big gun and is good for Relapsing MS. What type of MS do you have? My dad has Progressive Relapsing MS and Copaxone did absolutely nothing for him. I haven't heard about Gilenya yet. I'll have to do some research. Be well. :hug:
 
Thanks

:eek::thumleft:I AM IN THE RELAPSING REMITTING FORM OF MS AND I AM GOING TO LOOK INTO TYSABRI AS I DON'T KNOW WHY MY DOC'S DON'T WANT TO TRY IT.THANKS AGAIN~
 
Hi. It's Molly. I have crohn's disease and my mom has MS. We both have slow chronic conditions. I have tried MTX, remicade, humira, entcort and prednisone. I developed allergic reactions to remicade and humira. Survived on prednisone and entecort for years until they stopped working. My mom is taking avenox injections but her M.S. is progressing all the same. I will have to look into these drugs. Now, after 2 surgeries to help me feel better, I feel the worst I've ever felt d/t reoccuring c-diff. I really feel for you. Life is soooo unfair.
 
Hi~thanks for your reply Molly

:ghug:..it is so nice to finally conect with people that are going threw simial things! My Ma's MS was really bad she was chronic progressiv (she is 56 and had done very well up to the last few years) she went on chemo last year to the nerologist thought if she did this copaxone might work for her. She is out walking and doing really good! However I should say that the chemo opened her imune system up to alot of things she got T.B. that she had to treat for a year only to find out 6 months latter that she had this other can't remember the name but some weird lung thing that is dorment but could become active. but overall I think she is doing really well and if I ever get in that stage I might consider doing something drastic like chemo. well thanks for responding take care ~keep strong! Merry Christmas :):)
 
I see this is and older thread, and I am new and do not know how to ask a question,... so I thought I would start here. I have had MS since 2003, and last year in June was diagnosed with Crohn's. I spent a month in the hospital for the Crohn's, went home, and then back to work a week later. I am gonna LOSE my job! I have fmla, but I miss so many days and am chronically late, some days I call, but some days I just walk in late and try to "blend", or leave early due to fatigue, or what I call "bathroom troubles" or just sheer anxiety, due to all the things I already mentioned. My MS doctor said he would write me out for short term disability, but I have just been trying to "tough it out". I have an Ok job, and don't won't to lose it. But at the rate I am going, it is just of time. I am a terribly shy adult, and have a difficult time approaching management, and I am just plain ashamed of my situation. Any advice would be helpful. Thank you
 
I am new to Crohn's. I was diagnosed with MS in 2010. How are treatments working out for the people that have both diseases. I would appreciate feedback, as I go to meet with GI and MS specialist on Tuesday.
 
I started tysabri on Jan 2,2013, I have remitting relapsing MS and was diagnosed with Crohn's last year. Have had MS since 2002. I have been told to be patient. One dose of tysabri, an infusion given every 28 days isn't gonna work miraculously, I go back Jan 30 for 2nd dose. That is all I know. I do know my MS got a lot worse after my Crohn's diagnoses.
 
Thank you for the info. I am having a lot of new symptoms, but i'm not sure if it is my MS, Crohn's, or medication side effects. I am on Imuran. Having more tests this week.
 

David

Co-Founder
Location
Naples, Florida
ke22y, biologics can have that affect. Has your doctor discussed that with you? If your MS is getting worse, biologics might not be the best medication for you. Conversely, some benefit has been seen in people with MS who take Low Dose Naltrexone which also treats Crohn's disease.
 
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