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Posted 6/20/2007 7:36 AM (GMT 0)
Hi everyone,

I have suffered from Crohn's Disease for 30 odd years now....have recently been told that I probably have MS also ...I know they are 2 autoimmune type diseases. Anyone else among you who have or may have other autoimmune diseases,simultaneoulsy.?Just wondering how frequently this happens? Do medications from one lead to a predisposition in another?
I was adopted so could never get a history of what my parents may or may not have passed down....but I do have two daughters....one who is expecting..she has been suspected of having crohn 's disease. Now , everytime she complains of some small thing that is surely related to hormones and pregnancy...I worry!

Thanks for listening to me....I worry a lot! It's great to have a 'good sounding ear' in you wonderful people. Just needed to rant a bit tonite I guess!.

Marie-Claire

Posted 6/20/2007 1:49 PM (GMT 0)
Hey M-C,

This is an interesting question. I was told by my neurologist that if you have one autoimmune disease that you are a bit more predisposed to having others. There are at least a couple of others here who have more than one autoimmune disease. Michelle (who is in the hospital right now - prayers please ) has lupus and MS. I have a harmless skin condition called granuloma annulare which is thought to be autoimmune and often a precursor to other autoimmune diseases. When it showed up 5 years ago, I was tested for RA and lupus and those tests came back negative but then later was diagnosed with MS. It is interesting. I have not heard anything about the medications leading to a predisposition to another disease. And because most treatments seek to 'balance' the immune systems that seems unlikely. In fact, once I started treatment for MS, my skin condition cleared up. My neurologist feels that this was due directly to the MS treatment.

Great thread. I hope others will be along to add to this.



Love and prayers,
Posted 6/20/2007 7:08 PM (GMT 0)
Hey Marie Claire

Yes! Great thread! I'm not dx'd with ms or anything else to answer my puzzling symptoms, but do have psoriasis..an autoimmune disease. I too have been told that persons with one autoimmune are more likely to find they have more than one. It's an interesting topic for sure. Many here will prob be along to offer input and i'm looking forward to seeing their responses. Thanks for asking such a great question! Best wishes to u'r daughter and try to relax a little and just enjoy this precious time for u'r family. Congratulations!
Posted 6/21/2007 6:32 AM (GMT 0)
Thank you rhonda and Gretchen.....for responding to my post.
Rhonda...I love the saying you have in blue at the bottom of all your posts....I guess the Lord answers your prayers one way or another....always!!!
God Bless
Marie-Claire
Posted 6/21/2007 4:11 PM (GMT 0)
Hey Marie Claire

YES!!! The Lord always answers our prayers...one way or another. Amazing tho...we often fail to see those answers if they are not what we expect or want. Thanks for being here to remind us of this friend. ;)
Posted 6/22/2007 6:41 PM (GMT 0)

Hi Marie-Claire

Have you heard about the study being done on Crohn's at Penn?  They had such favorable results in the first part of the study with the effect of low dose naltrexone on Crohn's, that more money was provided to continue the study.  This drug is also being used for MS with very good ancedotal reports. I am taking it for MS.

Just thought since this med seems to work for both diseases it may be something you want to check out.  Their website is www.lowdosenaltrexone.org.  This med is cheap, about $20 a month, so pharmaceutical cos are not behind this since there is no money in it for them. That may be why you don't hear much about it.

Posted 6/22/2007 9:40 PM (GMT 0)
I too have MS and Crohn's and have been searching high and low for another like me. I was DX with Crohns first aver 8 yrs ago and MS just a few yrs ago. I have been through 2 of the MS meds ( betaseron and Rebif ) neither worked, decreased my quality of life imensly. for Chrohns have been on lots, pentesa, asicol and more recent they love giving me IV steroids and prednisone which i hate. I have said no more. I know that some of the Crohns meds can cause neuro probs and or MS, like humera and remicade. i think 6MP is the only other one ok to take whwen you have MS too. i am in the process of trying to get on the new drug Tysabri. My GI wants me on it but my neuro does not like it.
Marie-Claire - i iwould love to talk some with you, as i isaid i have been looking for anyone who has these 2 diseases....

Amy
Posted 6/24/2007 7:06 AM (GMT 0)
Amy
Thank you for answering my post. I will come back to this post tomorrow and talk some more. It is midnight now on Vancouver Island...and I've had a trying day..health wise. I'm excited about finding you Amy..if you'll just be patient with me for today. I seldom get a 'Normal" day....it seems there is always something to complain about although I don't usually let anyone know how bad things can get. My two daughters are pretty good at 'reading' me by the look on my tired old face. seems if crohn's isn't making life miserable, ms, or both are kicking my you know what.!! Anyway, I'm really tired tonight..so I will return tomorrow, refreshed and rested and ready to chat. ...that is if I can get the computer away from my 17 and 18 yr old....which is why I am usually on the computer so darn late at night. Well for someone who was too tired to talk I sure have gone on and on already.
Looking forward to getting to know you Amy....
thank you all of you for anwering this post.
Kimc I will definately check out the webb site you mentioned ..thank you
God bless and good night .
Marie-Claire
Posted 6/24/2007 11:46 PM (GMT 0)
Hi Marie Claire,  I have posted on several different sites about the same issue.  I have MS and had ulerative colitis 30+ years ago.  It was fulminating UC and ended up with total coloectomy and have lived with an ileostomy since.  I was recently diagnosed with interstitial cysitis which is awful.  Now I don't know which disease to blame all my bladder woes on.  Also IC is very uncomfortable.  At least I have got the MS discomfort pretty much manageable at this point. 

When I was first diagnosed with MS my neuro told me that it wasn't uncommon to see MS in people who had previous autoimmune disorders, especially bowel disorders. 

The other bad thing about UC is that now I have to eliminate many foods/beverages that I love.  The biggest problem is COFFEE!  Coffee is how I tried to cope with the MS fatigue.  Jeez.  Now I just limp (literally) through the day with frequent naps.  I beginning to hate the sight of my bed.

I'm a retired RN too.  I hated having to stop working but MS finally shut that door.  I'm' just a little older than you are-56.  I live in Wyoming, hot, dry and windy.  Wev'e had 6 0r 7 days of 100 or more degree temperature, and I'm one of those MS'rs that suffers with the heat. 

I think I saw that you live in Vancoover?  I've been there and if my hubby would cooperate I'd love to live somewhere like that.  It's beautiful up there, and I bet cooler and greener.  I'd like to hear more from you.  Deb

  

Posted 6/25/2007 8:15 AM (GMT 0)
Hi everyone.
So nice chat with someone who "gets it". I'm happy to be here tonite with all of you.
Rhonda, yes I have psoriasis. Not to an extreme...but on my hands and scalp mostly.
Deb and Amy, so glad to have found you. You can email me if you wish....I left my email adress in my profile....Yes, Isn't it hard to know when one disease begins and the other ends. I'm never sure what is causing me the greatest problems. I too had to quit work as an RN because of my health....it was a difficult adjustment. I don't know how you manage these extreme temperatures Deb. We here on Vancouver Island, near Victoria....across the way from Seattle ... get mostly temperate weather.....rain, rain, and more rain until spring...we do get the occasioanl 'heat wave' although by your standards it sure wouldn't be. ....we get mid 70's to mid 80's during the summer, but that is usually offset by a cool ocean breeze. Even then, I find it hard to take.'
My fatigue hits me like a ton of bricks.....out of nowhere. I'll be having a good day , energy wise, then , blam....I can barely hold my torso up. I drive a scooter to get around town, and use one or two crutches to walk. I'm only 50 years old this year...and most days I feel like I'm 100. I've gone down hill so much in the last 4 years or so since my first "MS" attack....and still no firm diagnosis in that area. My neuro won't put me on any meds until I have another major attack ....she says there are still not enough plaques on my tired old brain!.
The CD is fairly well maintained.....it's always there, but I haven't been hospitalized for strictures or obstructions in about 5 years.
So I muddle along.....slowly!(slowly being the opperative word).
Well, ladies....keep cool if you can....one good thing about having to slow down and take life more slowly is \getting to notice so many wonderful things I may have missed when I was rushing through my daily life.
love and prayers
Marie-Claire
Posted 6/27/2007 1:47 AM (GMT 0)
Hi there,

I was dx in August 2006 with MS and I also have Ulcerative Colitis. I have also heard once you have one AI disease,you are more likely to get another. Lucky us.

Posted 6/29/2007 9:49 PM (GMT 0)
I have crohns disease and now under care to decide what is happening neurologically.
I seem to have some very MS symptoms and yet a good deal of Parki symptoms. Twin has PD but no Crohns. Two neuros do not think I have PD and want me to wait to see what develops.
I am on PD meds to determine by drug therapy if they effect symptoms I am having and they do to a small degree, my symptoms are not atypical of PD and I am more wheelchair user now and twin is not.
I am told I am 'complicated' so the jury is out on all this.
God, it was a revelation to hear what folks here say.
I heard on Irishhealth.com (I think) or was it the crohns site here on healing well that there is now some debate as to whether crohns is an autoimmune disease or a genetic thinng, evidently they have isolated a gene in crohnies.
Like everything medicine is not an exact science - I for one, wish it were, even to the point of just getting a diagnosis, would be a great help!!!
xxto all o ye
Ann
Posted 6/30/2007 7:41 AM (GMT 0)
Hi Ann
My God! seems like you have been thru the wringer!health wise!. I sure hope they get to the bottom of this new neurological thing.
They had me on PD meds as well for various spasms, shaking etc....but they didn't work. ...only seemed to make me feel even worse.
It's a wait and see game for me as well.....meantime I seem to be getting progressively worse. When I think about what I could do 4 years ago....and what I can no longer do now...I sometimes get a bit worried. Where will I be in 5 years or 10 yrs from now. My daughter is expecting her first baby....I am so thrilled and thankful that I will still be able to enjoy this blessed child while I still can.
Just goes to show, that you must live in the present...we sure can't predict what the future will bring..and for those of us with chronic disseases....the future can be a little frightening.
I try to stay positive though....I appreciate little things so much more.
God Bless Anne.
Mary (aka marie-claire)
Posted 7/1/2007 3:45 AM (GMT 0)
Hi everyone! :-)

I don't have Crohn's disease, but I have had MS for 31 plus years and I will be receiving my 10th Tysabri infusion on July 11th.

Since both MS and CD are autoimmune diseases which involve inflammation cells which cause damage, Tysabri has been studied for both diseases.

Furthermore, the company (Elan) whose scientists discovered Tysabri (formerly known as Antegren) has filed for FDA approval for the use of Tysabri in Crohn's Disease, and there is currently a FDA Advisory Committee meeting scheduled for July 31, 2007. It is my understanding that approval for CD might be forthcoming in October 2007.

When the FDA had its Advisory Committee meeting with regard to the use of Tysabri in MS on March 7th & 8th, 2007, I had testified (via videotape) in an effort with other MS patients (including CD patients that testified) to bring Tysabri back to patients who wanted and needed it.

Needless to say, that was a very emotional time for all of us, including the CD patients that knew the FDA would be deciding on Tysabri for MS, and not for CD at that time - but they were there anyway, supporting us and Tysabri and even testifying as to Tysabri's benefits for CD.

As a matter of fact, I recently met a young man on another MS forum that has both MS and CD. He had to change neurologists when he moved and his new neurologist was unwilling to prescribe Tysabri for his MS, but his GI drs wanted him to go on Tysabri for his CD, but they couldn't prescribe it for him because it hasn't been approved for CD yet!

I believe this young man's GI drs contacted his new neurologist and they discuss Tysabri with him, including all of the studies that have been done [ENCORE & ENACT I believe?] advising that this patient would definitely benefit from Tysabri which would treat both of his conditions with just one med....and the neurologist then agreed to put him on Tysabri! Talk about a happy patient - LOL.

Please feel free to e-mail me if I can help further.

Have a great evening everyone.

Lauren cool
Posted 7/1/2007 12:42 PM (GMT 0)
Gday Marie-Claire, just for the record, I am waiting for a neuro visit re- Ms possibility, but I have 3 sisters - 1 with Crohns disease and the other 2 with Ulcerative Colitis. They are of great interest within the medical profession. What are the odds of 4 sisters "lucking out" with major autoimmune diseases like this?? There are just the 4 girls in our family too. Pretty weird , don't you think?
Annie
Posted 7/2/2007 7:35 AM (GMT 0)
yep, Annie, I think that's pretty weird. I am closely watching my 2 daughters for either signs of MS or Crohn's disease( or any other auto immune disease for that matter). I am adopted..along with my 3 siblings. When I got pregnant for my first daughter, I had already been diagnosed with CD so I decided to try to find my medical records to see what other wonderful things I may be passing down to her....I was adopted from Hull , Quebec, from an orphanage which has since closed. The thing is they didn't keep medical records in those days...not much was asked when a single Catholic mom dropped her baby off at the orphanage.
So I keep my fingers crossed and hope that nothing has been inherited. I am not too hopeful though, because neither of my girls are extremely healthy...and I always seem to be able to pick out symptoms from either disease in one or both of them. Now my baby girl is expecting a baby of her own which makes all this rather nerve racking. ! I guess you just pray that everything will be o.k. and know that if it isn't God will give you the grace and strength to deal with it somehow.
You darling folks here in these forums are a real help.
Mary...aka Marie-Claire
Posted 7/5/2007 10:18 PM (GMT 0)

Hi, excellent thread!  I have CD (four years) and was diagnosed a year ago with hypothyroidism  (autoimmune too).  Now I have some really odd neuro symptoms and am waiting to see the neurologist.  I asked the endocrinologist last year if, now that I had two autoimmune diseases, I was going to get anymore.  He said hopefully not, always a possibility. I asked the immunology clinic if the neurology symptoms are likely to be autoimmune, and the answer was "probably".  No one's mentioned MS, but there are other autoimmune diseases that cause neurological symptoms.  I will just have to wait for my appointment.  It seems there are many people on this site "collecting the set" of autoimmune diseases!  On the up side, that really means we only have one real health issue, it's our immune systems.  And maybe one of these drugs you've mentioned might eventually lead to something that works for all of them.

Posted 7/7/2007 12:26 AM (GMT 0)
Hi there. Interesting thread. I was diagnosed with Ulcerative Colitis in October 2006, and think I'm finally (fingers crossed) getting that under control. about a month ago, however, the entire right side of my body (face, arm, leg) went numb for about a day and a half. Since then, I've had persistent but intermittent tingles, numbness and "buzzing" sensations in my arms, legs, hands and feet on both sides of my body. Not painful, just annoying. I'm also experiencing serious fatigue. Anyhow, I was referred to a neurologist pretty quickly - I suspect because of the autoimmune connection, and am currently waiting for an MRI to see if MS is a possibility.
Posted 7/18/2007 7:34 PM (GMT 0)
Hi, I am new to this forum but have been on the Crohn's board for about a year. I have ankylosing spondyli*** and Crohn's and am awaiting my neurologist appointment tomorrow for exploration of possible MS. The AS was DXd in 1996. I had symptoms of MS in 2000, but with a normal MRI and normal nerve conduction, the DX was neuritis. In 2005 I began having bowel symptoms that were finally DXd as Crohn's about a year ago and while the Crohn's journey was going on, I began developing numbness in my left arm, some slight muscle weakness (shoulders and legs noticeable only when working out), slight muscle atrophy in calves, and increasingly frequent muscle cramps/spasms in the feet and legs with perpetually super tight leg muscles that became especially noticeable during my monthly massages. Nutritional/CD causes and myositis were ruled out. During that time, I also began having on-again/off-again unexplained eye pain in one (left) eye. I have had multple cases of iritis and episcleritis but the pain exists without the opthalmologist being able to determine anything. Left side hand tremors began earlier this year and I also have increased weakness with heat that has started since summer kicked in. When I get hot or tired, the tremors increase and sometimes occur on the right side as well. We'll see, though, as the MRI was normal again. My AS DX and my CD DX were both atypical because the standard tests were all normal. CD was diagnosed only by the pill cam (all ulcers in small bowel) after many months of normal tests. I don't know what to think but I suspect I need to be ready for more tests!
Posted 7/18/2007 8:27 PM (GMT 0)
You neurologist might ask for a spinal tap when trying to diagnose MS, as MRIs can sometimes be clean and show no lesions at the time that the MRIs taken. If he does ask for a spinal tap, he'll probably be looking for MS bands.

Good luck and all the best to you.

Lauren
Posted 7/18/2007 9:33 PM (GMT 0)
Wow, opossumgirl, what a coincidence! I was diagnosed with crohn's in 2003. in 2004 the rheumatologist said the lower back pain was just arthritis asscociated with crohn's, but it's never gone away (the crohn's did subside eventually). no tests or imaging done, which makes me wonder if i should ask for that to be investigated further... i was diagnosed hypothyroid last year and am on thyroxine too. i saw the neurologist for weird nerve symptoms on tuesday. he is sending me for an MRI and says it's probably nerve inflammation. I don't have nearly your array or intensity of symptoms though, i feel badly for you! I guess i got lucky. good luck with your tests!
Posted 7/20/2007 6:47 AM (GMT 0)
Hello Everyone,
Thank you for continuing with this thread. Isn't amazing how many people with one autoimmune disease are suspected(or already have)a second, or even third. It took 13 years for Drs to finally diagnose the CD....kept telling me it was IBS, anxiety, worry, bad diet etc etc...but for some reason I suspected( my gut feeling all along was telling me) that I had CD. I ended up being right. Now for the last 4 years I've had these weird neuro symptoms...I get a "probable MS'''...but you know my gut tells me that it is. I may be wrong but my gut feelings about things are usually right on.
For all of you undergoing test after test....hang in there...you are in my thoughts and prayers.
I have a hypothetical question. I will put in a new post just for interest. Tell me what you think.
Mary
Posted 4/13/2013 8:55 PM (GMT 0)
   Hi!I am a 52 yr old Canadian man.I was dxd with Crohn's in 2004,osteoperosis in 2008,busitis in 2011,osteoarthrits in 2012 and also the big one MS(ppms)on Nov 1rst 2012.I will never forget that day.In 2004 I had a bowel resection,they took out over 3 feet of my small intestine.2006 had major surgery on anus when they removed 2 large polys on the outside and 2 large on the inside.They had to do reconstructive surgery to fix my anus good enough.I came very close to having a bag put on at both operations.I also have G.E.R.D.(gastrointestinal reflux disease)and a mild to moderate case of hyper-hydrosis.Because of the Crohn's I have GERD.I was just searching the web to see if anyone else had multiple auto-immune diseases.I guess I am not alone.You know what they say"MISERY LOVES COMPANY".You know I don't know what it is that makes me feel better if I know others are having just as many  problems as me.It isn't that I wish this on anyone(especially MS and Crohn's together).That being said it is a releif to know I am not alone.My last statement would be that my neuro told me that if I had 1 auto-immune disease I was more likely to get another.
Posted 4/30/2013 5:34 PM (GMT 0)
@marie claire.. yes I am 34 yrs old and I have been diagnosed with crohns disease for 7(had bowel resection and this too has been in remission for 4yrs), I was diagnosed with psorasis and 4 yrs ago I found out I had hep c (done treatments for 48 weeks that is in remission)Now in Dec I was diagnosed with MS.. I was trying to research why I am having all these issues and no one in family has any problems except cancer.
Posted 2/12/2014 11:53 PM (GMT 0)
Hi everyone,
I just joined this site and I am also looking for people who have crohns and ms and what you do for treatment. I have had crohns for 27 years and was just recently diganosed with ms. both my gi and neuro want me to go on tysabri so that we can treat two diseased with one drug. would love any comments and info! and sorry quit message to get me started on this site just running out the door! :)
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