Help! I have Crohn's and MS

[jay.r369]

Hi!
I am 25 have both MS and Crohn's disease. I have had MS since I was sixteen and was diagnosed with Crohn's almost 2 years ago. My MS has lain dormant since January 09 but my Crohn's has been very aggressive and no one has been able to put it into remission since I am told the drugs they use for Crohn's will make my MS flare up.

Iam waiting for aproval to get coverage for Tysabri (Natalizumab) which I am told works wonderfully for both MS and Crohn's but am absolutely terrified of the risk of developing a brain infection. I am told that Tysabri is my only hope.

Is there anyone wlse out there with both these terrible diseases? If so, how are you doing!? how are you being treated?

 

[Snoflayk505]

Have you tried diet to control both? I have heard that some have had success with treating MS with diet. I believe Vitamin D is important with MS but don't remember much about what I heard.

As for Crohn's I suffered hard for so long for 11 years until I found the SCD diet. I am now symptom free and medication free. I hope you are able to find relief.

If you have any dairy allergies you might want to try Paleo. SCD allows aged cheeses like Parmesan, Swiss and cheddar and 24 hour fermented yogurt. Good Luck!

 

[bumble_bee]

Sorry I have no advice for you. I have Crohn's only but my mom has MS. I find it odd whenever I read or hear stories about the similarities of both diseases because of this. I wonder if there's a connection!

 

[bumble_bee]

Sorry I have no advice for you. I have Crohn's only but my mom has MS. I find it odd whenever I read or hear stories about the similarities of both diseases because of this. I wonder if there's a connection! Hope you feel better and continue to be symptom free from the MS at least

 

[David]

Hi there and welcome.

I understand that you were 16 when you were diagnosed with MS and 23 when you were diagnosed with Crohn's. How old would you say you were when the symptoms of your Crohn's Disease first started appearing? This doesn't necessarily have to be digestive symptoms. For example, if you were getting weird rashes, sores or anything like that, that could be a clue as well.

Thanks

 

[D Bergy]

I would go to great lengths to make sure your MS diagnosis is correct before taking an immune suppressant. Lyme Disease is so often misdiagnosed as MS, and when it is, the treatments are not compatible.

It is not unusual for those with longer term Lyme Disease to end up with Crohn's symptoms. Lyme Disease weakens the immune system and allows other autoimmune type diseases to develop.

Dan

 

[Kev]

Have you considered the possibility of using LDN to treat both Crohns and MS together??? I know the lowdosenaltrexone.org website claimed that LDN can be used to treat MS, and I know it can/does stop Crohns in its tracks. Might be able to kill 2 birds with 1 stone.

 

[Lucinda]

My mother has both. She developed Crohn's first and then MS. I have Crohn's and fear MS. There is growing evidence that a gluten free diet helps both diseases. I have been gluten free for several years and I can tell you it has made a huge difference. I was told I probably had Celiac but I'm not sure if that is the case or if I just don't tolerate gluten. I can say that many of my symptoms were relieved by going gluten free and these days I am leaning towards eliminating all grains. I cannot convince my mother to do this but I do believe it makes a difference. I had had many of the same health problems as her (to the point that it's eerie) but since going off gluten, I have not progressed to MS but I still have a few years until I reach her age of MS diagnosis.

I agree it's worth ruling out Lyme disease as well. Good luck.

 

[David]

I realize there is overlap between MS and Crohn's but I sure hope everyone with Crohn's was evaluated for subacute combined degeneration of the spinal cord due to vitamin B12 deficiency (which is common and sometimes not treated in people with CD) prior to the MS diagnosis. SCD can lead to both spinal and brain lesions.

 

[steve55]

Look into helminth (hookworm/whipworm) therapy which helps for both conditions. There is a yahoo group called helminthi​ctherapy that can provide more information.

 

[Manzyb]

HI jay!

I'm sorry that you have to deal with both diseases. That's got to be really rough.

I completely understand your worries about getting the brain infection with the tysabri. I am on Tysabri currently, and they have a blood test called the Anti-JC virus test. Basically if you are negative you will not contract the PML. If you are positive, then they probably will not give you the medication as the chances are a lot higher of getting the infection.

I know I can't give you loads of comfort, but I would definitely ask about this test!

Good luck toy ou!

 

[jay.r369]

HI jay!

I'm sorry that you have to deal with both diseases. That's got to be really rough.

I completely understand your worries about getting the brain infection with the tysabri. I am on Tysabri currently, and they have a blood test called the Anti-JC virus test. Basically if you are negative you will not contract the PML. If you are positive, then they probably will not give you the medication as the chances are a lot higher of getting the infection.

I know I can't give you loads of comfort, but I would definitely ask about this test!

Good luck toy ou!

HI MANZYB!

Yes I have had the "operation anti JC virus " baseline testing done and I have not received the results yet. I did not know that if it is negative you prob will not get it this is music to my ears. Currently Iam waiting for approval for coverage from bluecross here in Canada before I start it.

So how has the tysabri been working for you? Are both your MS and CD in remission? I sure hope so!

Anyways thank you for your reply you are the first person I have spoken with that has same condition as me. And just so you know, you have given me loads of comfort!

Thanks again and good luck in your battle!

 

[jay.r369]

Hi there and welcome.

I understand that you were 16 when you were diagnosed with MS and 23 when you were diagnosed with Crohn's. How old would you say you were when the symptoms of your Crohn's Disease first started appearing? This doesn't necessarily have to be digestive symptoms. For example, if you were getting weird rashes, sores or anything like that, that could be a clue as well.

Thanks

Hmmm, well the first obvious sign for Crohn's was 2 yrs ago with blood in the stool. But its funny you mention rashes. I have had a prblm with horrible exema rashes on my arms and legs since I was young maybe 12-13 yrs old.

 

[Lucinda]

Jay

The skin rashes could be an indication of Celiac. It is a common symptom. They are also finding Celiac can be a precursor to MS. I have had skin problems (dermatitis) since I was a child. I haven't noticed a direct relationship between my skin issues and gluten, but I haven't really tried to find one either. I have however also had stomach aches since I was a child, always aggravated by stress. I definitely have Crohn's. (Been diagnosed 3 times by 3 doctors. lol)

These disease are all so confusing and symptoms overlap. Regardless of what your diagnosis is, a good diet, reduction of stress, and vitamin supplements will certainly help since all these diseases are aggravated by stress and medication creates vitamin deficiencies. Both Paleo and SCD diets have been suggested. These diets are both gluten-free. They are also grain free and starch free. Anyone will feel better on these diets but make sure you have healed before trying it because they are high residue as well. The diets are quite strict so I would suggest taking it a little bit at a time if you go in that direction.

One final thing to remember. All the diseases being tossed about on this thread are autoimmune diseases (except Lyme) and it is common to have more than one. For example, my mother has been diagnosed with Crohn's, MS, and fibromyalgia. I have been diagnosed with Crohn's and Celiac. So regardless of what you ultimately decide you do or don't have, there are many non-medicinal things to keep in mind that will help you.

 

[jay.r369]

Jay

The skin rashes could be an indication of Celiac. It is a common symptom. They are also finding Celiac can be a precursor to MS. I have had skin problems (dermatitis) since I was a child. I haven't noticed a direct relationship between my skin issues and gluten, but I haven't really tried to find one either. I have however also had stomach aches since I was a child, always aggravated by stress. I definitely have Crohn's. (Been diagnosed 3 times by 3 doctors. lol)

These disease are all so confusing and symptoms overlap. Regardless of what your diagnosis is, a good diet, reduction of stress, and vitamin supplements will certainly help since all these diseases are aggravated by stress and medication creates vitamin deficiencies. Both Paleo and SCD diets
have been suggested. These diets are both gluten-free. They are also grain free and starch free. Anyone will feel better on these diets but make sure you have healed before trying it because they are high residue as well. The diets are quite strict so I would suggest taking it a little bit at a time if you go in that direction.

One final thing to remember. All the diseases being tossed about on this thread are autoimmune diseases (except Lyme) and it is common to have more than one. For example, my mother has been diagnosed with Crohn's, MS, and fibromyalgia. I have been diagnosed with Crohn's and Celiac. So regardless of what you ultimately decide you do or don't have, there are many non-medicinal things to keep in mind that will help you.

Hi, thanks for the reply.
I am going to look into being tested for Celiac as it does run in my family, thanks!

 

[Mables3]

This is my first time posting, so excuse any errors. I'm 47 and was recently dx w/crohns. Mom has UC. When I went on the prednisone I started experiencing alot of hand burning and tingling(along with alot of weird things). Anyways, 7 weeks after I stopped the prednisone and it still hasn't resolved and other weird sensory stuff started.
My dad's side of the family has 4 cousins and one uncle with MS(and they say it's not hereditary, ha). So now I'm being tested for that. So far brain MRI is ok. My crohns right now is mild and I'm on asocol only, but I was concerned about MS meds. I would like to see how you are all doing. TYSBRI sounds like a scary med, but it seems like they have a protocol in place. When I was on the MS websites it sounds like they only keep you on it for only a few years.
My family is a cesspool of a genepool! Dad also has Celiac. Hookworm is starting to look good. I'm going to check out the subacute combined degeneration of the spinal cord. My B12 was good, but I fall into the 10% who get iritis so arthritis type things could be an issue. Very confused at this point and hoping it's not MS. Sounds like they are hard to manage together.

 

[Lucinda]

Hi Mable,

I'm assuming you are female which would be good in the case of MS since it is more common in women but more aggressive in men. I believe, and I could be wrong, that the MRI will show lesions on the brain if the MS is active. Just like many other autoimmune disorders, it goes in cycles of relapsing and remission. Given the MRI came back clean, the tingling and other neurological symptoms could be something else. There are lots of possibilities out there and elimination is the best approach. There are also other tests in the process. My mom's diagnosis was confirmed with a spinal tap twenty years ago. I don't know what they do now.

I frequently freak out that I'm going to develop MS because my mom has it. Yes there is a genetic factor but there is also an unknown environmental factor. So genes are not a guarantee of illness. Also, you are a bit old to just now be developing it. Not impossible, but less likely.

I wouldn't worry about the MS meds until you know you actually have MS. It may be something completely different. Keep asking questions, testing various things and trying not to worry because that will only make it worse. Good luck. I know how scary this is. You have found a great place for support.

 

[Mables3]

Sorry Lucinda, didn't mean to scare you with the MS. It seems to cluster in families as it does in ours. They are all 1st cousins(my 2nd). The good news is that three of them are in their 50's and 60's and are doing really well. My neuro said you can have lesions in the spine, so I guess that is my next MRI. He also told me that 50% of neuropathy is sometimes unexplained. I find that hard to swallow as I am in good shape(except the Crohns). I thought I was too old for MS also(didn't think about it once I passed 35), but I have recently learned many people don't get dx until later(Anne Romney, Montel), but many have had small symptoms for years.

I'm just hoping to get it off the table and figure this out. I felt I was too old for Crohns at 47 don't need MS on top of it. Thank you for your support!

 

[David]

Hi Mables, welcome to the community

There's a variety of possible causes of peripheral neuropathy if that's what you indeed have.

When you say your B12 is good, what is your specific level?

We have a good wiki entry on peripheral neuropathy that expounds upon other possible causes that you may want to read.