# Crohn's and MS



## kenyasolovely (Oct 2, 2011)

wondering if anyone has heard of any correlation between Crohns and MS?


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## tiloah (Oct 2, 2011)

I have never heard of any connection between the two, other than if you have one autoimmune disease, you are more likely than the general population to have another (e.g. I have Crohn's and vitiligo).


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## kenyasolovely (Oct 2, 2011)

a good friend of mine was dx'd with MS right around the time I was diagnosed with Crohns and seems we have a lot of common symptoms. I was going to ask my Dr about it at my next visit I'm not sure if the problems I'm having are neurological or muscoskeletal....


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## David (Oct 2, 2011)

What are your MS-like symptoms and have you had your vitamin B12 levels tested and do you supplement B12?


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## glum chump (Oct 2, 2011)

I have MS and Crohn's. I was diagnosed with MS at 20, and Crohn's at 33. 

One of the extraintestinal manifestations of Crohn's is peripheral neuropathy, and peripheral neuropathy has similar symptoms to MS without the degenerative (elevated lesions) aspect of it. 

Kismet


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## vandygrad97 (Jan 14, 2012)

I was diagnosed with Crohn's 10 years ago and in 2007 began to have really bad headaches.  My internist ordered an MRI and they found several white matter lesions in my brain.  Their first thought was that it was MS, so I was sent to Johns Hopkins for a second opinion.  My neurologist there ran a ton of tests and told me the lesions in my brain were from IBD.  That was at the MS center, which is one of the top centers in the country.  Apparently, since Crohn's is an inflammatory disease, it can cause inflammation in almost any area of the body.   My spinal tap and evoked potentials came back clear.  Who knew Crohn's could cause so many issues?  I go for a follow-up this week, just to see if there have been any changes in my brain since the last MRI.  I would suggest anyone who has been given both diagnoses to make sure your doc has run all of the appropriate tests.


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## Rebecca85 (Jan 15, 2012)

Found this very interesting as I am currently undergoing testing, with a possibility of MS. So far they have found 'white spots' on an MRI, They are thinking next maybe a lumbar puncture (is that the same as a spinal tap?) and MRIs down the line to look for changes. 

They originally thought it was peripheral neuropathy (after I managed to convince them it wasn't just depression, and b12 etc had been ruled out), but nerve conduction studies came back clear.


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## tiloah (Jan 16, 2012)

Egads. I hope you guys don't have MS. Hope your testing goes well. Yes, spinal tap is slang for lumbar puncture.


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## vandygrad97 (Jan 16, 2012)

Rebecca85, That sounds so similar to my story, although, my B12 was really low.  I have been on B12 shots for a couple of years now.  The problem now is that I still have numbness and tingling issues in my back and in my hands.  I have recently developed gastroparesis (slow stomach emptying) that is actually a nerve issue, not related to Crohn's.  I have no idea what my neuro is going to do at my follow-up.  I am still guessing he will stick with the "Crohn's is causing most of your issues" diagnosis.  I am glad to know that my lumbar puncture was negative, but that was also 2 years ago and things can change.  I have fibromyalgia as well and that can mimic several of these issues.  I feel like I would be a prime candidate for "Mystery Diagnosis!" 

Do you know where your white matter lesions are located?  That does make a difference.  Mine are in the frontal and parietal lobes (not characteristic of MS) on both sides.  I have about 11 total.


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## Mountaingem (Jan 17, 2012)

:hug: Sending hugs! That's a heck of a lot to deal with!:hang:


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## Dime (Mar 19, 2012)

My dad died from MS the same year I was diagnosed with crohnes. Also my grandfather on my fathers side suffered from Bechterews disease. The three diseeases seem to have so many things in common it is hard for me to belive that it is just a coincidence.


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## Rebecca85 (Mar 19, 2012)

Found this- looks like it's not a coincidence, but IBD does increase risk of other diseases. Also treatments are the same or similar- Tysabri for example is used in CD and MS.


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## taureantiger (Jan 29, 2014)

These comments are very interesting, I had not heard of a connection between Crohn's and MS till I started doing some research on it yesterday.

My problems all started in July 2009, when I had a fall and gave myself a nasty concussion - or mild traumatic brain injury - from which I have never recovered and constantly suffer from chronic fatigue and all its associated problems.

I was diagnosed with Crohn's about 18 months after the fall. That was two years ago. Both conditions cause fatigue and there is, therefore, some cross-over of symptoms. So much so that it can be difficult to know which condition is causing the problems at any given time.

Lately, things have taken a turn for the worse and I started to wonder if, unbelievably, I had MS. I had a vague recollection of reading somewhere that there was new evidence to suggest MS could be caused by falls.

So I read up on MS - and, yes, apparently doctors have long suspected MS could be caused by traumatic brain injuries (through falls, whip lash, car accidents, sports injuries etc). At the least, it is thought a traumatic brain injury can trigger a major flare up.

But what really interested me was discovering it was an auto-immune disease, just as Crohn's is, but it attacks the brain rather than the bowel.

Help...my body is eating itself up!!!!

Ok, so then I wanted to know if there was a connection between Crohn's and MS. Well, yes, there could be apparently.

But it gets worse! According to one article I read, (see link below), people with Crohn's not only have a higher risk of getting MS than the general population, the "powerful new drugs" we take to control the symptoms of IBDs are suspected of causing MS.

So this all brings me to my next question...can a traumatic brain injury cause Crohn's? Or, more accurately, can it cause your immune system to go haywire and start attacking various parts of your body.

Anyone have any thoughts on this that they would like to share?

Below is the link to the article:

http://www.webmd.com/ibd-crohns-disease/news/20050901/ibd-linked-to-risk-of-multiple-sclerosis

I just want to add that I am being hit pretty hard by the fatigue thing at the moment so I have not been able to concentrate long enough to thoroughly research these issues at this stage. I am sure there are many loopholes in my theory, I'm really just putting out some feelers to see if any relevant info emerges. I have a totally open mind on the subject.

At the moment, I think that I think the following is the more likely scenario:

I have probably had mild Crohn's for many years, as it was recently discovered I have a 15 cm stricture on ileum valve. An MRI confirmed the stricture was scar tissue. That is a huge stricture and cannot possibly have developed in just two years.

I have also had asthma since I was an infant. As asthma is also linked with MS and Crohn's - along with psoarisis (which my sister has) and arthritis (which my brother has) - I think I have inherited a defective gene that leaves me susceptible to auto-immune diseases.

I think maybe the fall, in which I took a king hit to my whole body, gave this susceptibility to auto-immune diseases a massive turbo blast.

Will look forward to your thoughts!


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## mscrohns (Mar 6, 2014)

Hi taureatiger -
I joined this forum just to respond to your post. I was diagnosed with MS in 2006 after being misdiagnosed with Fibromyalgia in 1998. More recently (2013) I was diagnosed with Crohn's Disease. So I'm lucky enough to have both of these fun conditions!! So I've suffered with extreme fatigue and Gastro issues for many years. Then I got perianal abscesses and finally a wonderful fistula which hasn't healed in the past 5 months. My GI doc wanted me to go on Remicadee (a very useful drug for healing Fistulas in Crohn's disease) but it would have been bad for my MS. 
Decided to use azathioprine instead but it could take a year to work - or maybe the fistula will never heal. I will be starting Gilenya for the MS soon since the Avonex I've been taking combined with the azathioprine has increased the flu-like side effects of Avonex.  Anyway - I've been looking to see if anyone else out there has MS and Crohn's like I do. 
No fun. 
Jessica


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## taureantiger (Mar 6, 2014)

Hi MsCrohn's,

Welcome to the forum. I really feel for you, having to cope with both conditions, it really is not fun.

I'm on azathioprine and I recommend you go on it if that is what your GI recommends. It takes two to three months for it to start working. It can cause you to feel a bit sick after taking the tablets, so I take mine just before I go to sleep at night and I don't have any problems.

I also take Pentasa, which for me, seemed to make me feel better almost immediately.

On a lighter note: I have also starting drinking apple cider in the morning, primarily because I have slightly elevated glucose levels and it is claimed apple cider is good for this. But apparently cider can also be used to remove warts and moles and reduce scar tissue, so I'm hoping it might just get to work on my reducing my stricture while it is passing through my system. 

Ha, ha, well it can't do any harm anyway and there is nothing like hope to keep you going.

In case anyone is interested: I use organic, unpasteurised "Bragg Apple Cider" with "The Mother". You-tube it to find out more.

I put one dessert spoonful (although will increase this to two in time) in a glass of water every morning. I also squeeze the juice from half a small lemon into the glass to help with the taste.

I have also started taking Kalari Crush, which I get sent over from Australia. It is packed full of the nutrients and anti-oxidents many of us with Crohn's lack, especially those on low residue diets (as I am).

By the way, I have no vested interest in either of these products. I am taking them simply to try and get my general health in the best possible shape so it can better deal with my other problems.

I decided against mentioning my thoughts on MS to my GI and GP for now, as other events kind of took over.

But my research has been on-going as I am determined to find a way to heal my brain, if not my gastrointestinal tract, and get my life back. 

I have recently discovered research that shows many people with traumatic brain injuries have hormone deficiencies/imbalances due to damage to the hypothalamus and pituitary gland.

I have just had a raft of blood tests done, which show I do in deed have a number of hormone deficiencies including an almost total lack of testosterone which is needed for energy - even in women - and some other odd things going on that could explain some of my symptoms.

This includes the muscle weakness I dreaded may be due to MS.

It can also affect water-sodium balances (which causes intolerance to heat), insulin levels, multiple problems with the immune system and gastro problems. 

I don't fully understand the implications of my blood test results as yet, as I am waiting from a report from my GP - and, I hope, a referral to see a endocrinologist for further investigation. 

So, I will keep you posted on this.

Meanwhile, I would be really interested to know how many people with Crohn's or MS think they might have had a concussion or mild traumatic injury in past years. You don't need to have lost consciousness to have suffered a concussion and, therefore, it often goes undiagnosed. 

Incidentally, my B12 is good, as I have regular injections.

vandygrad97: You have a number of the same symptoms I do - including severe headaches and tingling in the hands - and have raised a number of interesting issues that I will look into. Possibly an MRI of my brain might be in order, if for no other reason than to rule out "white matter lesions" due to Crohn's or MS. My neuro is also blaming Crohn's for all my symptoms, however, I have had these symptoms since the TBI. The Crohn's flare up that led to a diagnosis came two years later.


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## mscrohns (Mar 6, 2014)

Hi taureantiger 
Thank you for your reply. Yes, I've been taking Azathioprine since November - no change in Crohn's / fistula. I'll keep going with it. 
I would suggest that you might want to get a spinal tap to check for the MS oligaclonal banding which can also tell you if you have MS - and an MRI although it sounds like there could be questions about whether the areas of scarring are due to MS or something else. 
I haven't heard anything about the possibility of brain injury leading to MS but I wouldn't be surprised - so much is unknown about the disease. I think mine was brought on by Lyme disease which I never knew I had but it was found in my spinal fluid when they were diagnosing my MS - which means that I had it for a long time previous to diagnosis. 
I think these autoimmune diseases are brought on in many different ways - something triggers the immune system into action and it goes into overdrive attacking us way more than necessary. 
Keep me updated on your findings. 
Jessica


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## mscrohns (Mar 6, 2014)

Couple more things - 
Yes, I've heard about raw apple cider vinegar (with the "mother") and have it in my fridge - thinking about using it regularly but was unsure about its effect on Crohn's. 
Also - have you had your vitamin D levels checked? Often they're low in MS. 
wishing you the best. 
Jessica


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## Trysha (Mar 6, 2014)

I was in hospital for two months after a subdural hematoma caused by a bump on the head.
A month earlier I had a colonoscopy which showed crohn's.
I was quite upset with this diagnosis and have problems ever since.
I do have times where the fatigue is overwhelming.
It is very interesting to hear your stories about possible connections with other disorders but I don't think I could take any more.
This post is to let you know about it though.
Feel better soon
Hus and best wishes
Trysha


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## D Bergy (Mar 6, 2014)

While this is not the conventional view, I believe it is pretty accurate.  

MS is almost never a true diagnosis.  It is a symptom of Lyme Disease.  An injury often causes it to produce symptoms which may or may not have been present before. 

Lyme causes a weak immune system directly from which other diseases can gain a foothold.  I have known of several people who developed Crohns after Borrelia Burgdorferi infection.  

Lyme tests are notoriously inaccurate. I have been treating my wife for several years for Lyme.  She is normal today but was very ill at one time.  No positive test either.  That is why I ended up treating her.  

Do some deep research from many sources. The intestinal issues of slow gastric emptying described is known in a Lyme circles as "Bell's Palsy of the gut".  

Good Luck. 

Dan


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## D Bergy (Mar 6, 2014)

Crohns like symptoms, in the presence of Lyme Disease may or may not be Crohns.  It could just be another Lyme symptom.  Just for clarification, if the Lyme is reduced, the Crohns like symptoms often leave also.  

Dan


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## Annzy (Mar 25, 2016)

I have had Crohn's for 20 + years and recently diagnosed with MS. I'm sure I have had MS for years and have not been dx. Untiled a brain lesion showed up then doctors started future testing. My ability of walking is poor. I am currently 63.


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## Annzy (Mar 25, 2016)

kenyasolovely said:


> wondering if anyone has heard of any correlation between Crohns and MS?


I have had Crohn's for 20 + years and recently diagnosed with MS. I'm sure I have had MS for years and have not been dx. Untiled a brain lesion showed up then doctors started future testing. My ability of walking is poor. I am currently 63.


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## David (Mar 27, 2016)

I'm sorry to hear that Annzy.  I hope they are able to provide you with treatment that helps.


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## Charlotte. (Mar 28, 2016)

https://www.ncbi.nlm.nih.gov/pubmed/24299027

This study suggests that there might be a link when treated with Anti-TNF.

https://www.ncbi.nlm.nih.gov/pubmed/24574797


For these studies, I would ask what the chicken is and what the egg is. It does not seem to be properly distinguished between the two, it just shows the results.
Maybe more severe cases of IBD (which require Anti-TNF) are linked with neurological disorders and not the drug itself?


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## JaneSays85 (Jan 6, 2017)

vandygrad I was diagnosed with ms with lesions and almost a complete absence of b12. I was diagnosed with Crohn's about ten years ago. I've never heard of Crohn's causing lesions... what was you're treatment for this? Did your brain heal or was the damage non reversable? I'm trying to figure out what my approach should be and it is looking more and more like a second opinion is in my best interest. Any advice would be tremendous.


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## Jimmy Lee (Jan 21, 2017)

This is quite incredible! I was diagnosed with Crohn's three years ago. My dad had MS, his sister, my aunt, had MS. My sister has MS. And guess what? On Monday of this week, I was called to come into the neurologist's office "as soon as you can." You guessed it: "You have multiple sclerosis, Mr. Lee." Oh well. 

I was having severe headaches and taking OxyContin for them. My PCP said that taking that was like using a bazooka for a gnat (to which I responded, "Have you seen the gnat, though?"). He sent me for a MRI with contrast. It came back consistent with MS, but a definitive diagnosis would need a spinal tap to analyze the fluid. 

I'm not surprised, though. I think I've had it for years. I can recall telling my ex wife that "something's wrong. I have no energy. I don't have enough energy to even cut the grass." It really got bad. I felt so guilty but couldn't explain it. It was like someone turned on a light switch.

Now I know. So much has fallen into place now. I was on Humira but developed a rare cancer, so I discontinued it. Then Azothioprene gave me pancreatitis. I cannot ever take that again. I'm still having extremely loose, water like stools and abdominal pain. 

I go on Valentine's day to see the neurologist to get started on a treatment to stop the progression of MS. I haven't reacted to it yet. I know I haven't. But all you can do is deal with it. Thanks for listening guys.


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