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anyone with neurological or MS type symptoms from crohn's or remicade?

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Posted 10/11/2007 1:45 AM (GMT 0)
right now and for the last 3 years (since i was dx'ed and started on cade) i have developed MS type symptoms. ill go thru a few of them. i have very poor balance, i pitch sideways and fall like i am drunk. my left foot turns in and drops and i trip over it. i have pretty bad tremors in my hands face and feet, and my eyes when im concentrating will move back and forth rapidly and out of my control. i have diminished strength, the left side is worse than the right, and i have extreme fatigue issues. i have memory issues, such as i know the name of someoneone or something and i have to really search my brain hard to get it out. theres probably more but i cant think of it right now.

im under the care of a neuro who is of the opinion that remicade can have casued this. there is a mock MS syndrome where it can cause MS or symptoms of MS. he is also involved in some new crohn's research that this type of thing can happen with CD also. sort of like when our whote cells attack our stomach it can attack neurological places too. he says that the only way to know is to come off the remicade to see if symptoms improve. but theres always the chance that its permanant, or just the CD, or not even caused by the cade and i still am getting tested for MS every 4 months.

SO my question is has anyone else ever experienced any of this? i dont want to scare anyone but its something i cant get out of my head.

i see my GI next week and i am going to talk to him about it. as it is we had to double the dose of the cade becasue it wasnt working. i am about ready to throw in the towel with remicade but i dont know if its my decision to make. i mean i know ultimately it is, its my body but i have such trust in this doctor. i feel like since its not working anyway why cant we try something else. but what if the issues i have are already permanent and once om off cade i cant go back on.

i dont know im just really confused right now. i have another cade in 3 weeks then 8 weeks after that as scheduled for now and i also wonder how long were gonna wait to see if its going to help or not. i dont know how long i can wait, i dont have such a high quality of life as i had before.

i know this is a lot of questions and information but it just keeps bouncing around in my head. does anyone have any opinions or thoughts on this? or advice on how to talk to my doctor:? i need that real bad, im not sure how to bring all this up to him without it seeming like i am questioning his treatment or demanding him to do something else. just anything would help, im kind of at a loss here.

thank you so much

bunny

 

Posted 10/11/2007 2:15 AM (GMT 0)
Hi Bunny, i have been getting ms symptoms as well and my GI imediately sent me of for an MRI scan to rule it out, which it did. Has your doc not suggested an MRI at all? It has turned out that i have nerve damage in my foot so it is numb most of the time. I hope you dont have ms on top of this nasty disease but if i were you i would be pushing for further testing to save you stressing about whether or not you have it. Keep us posted, best wishes

andorable

Posted 10/11/2007 2:48 AM (GMT 0)

Hi Bunny,

Before I was diagnosed with Crohn's I just knew something was wrong.  My arms and legs were and still sometimes go numb and tingle.  I have a lot of memory loss....especially visual memory loss.  For example, one time when I was out shopping by myself I couldn't get into my car and drive home because I couldn't bring up the visual image of my key pad.  Even though I had my keys in my hand and was shaking them in front of my face I did not recognize them and my keys.  Also, I drop things sometimes.  It's like the signal to keep my hand grasping an object just gets interupted and the object falls.  I have a lot of fatigue as well.  Anyway the reason I decided to write this message was that I began these symptoms before going on any Crohn's medication.  I also saw a neurologist who ran a CT scan and evaluated me and said that I had no neurological problems.  I really think it is the Crohn's causing the problems.

Posted 10/11/2007 2:50 AM (GMT 0)

Hi Bunny,

I forgot to mention in my previous message that I, too, am on Lipitor and Prilosec.  Maybe some of our neurologic symptoms could be caused by these drugs.  What do you think?

Posted 10/11/2007 3:55 AM (GMT 0)
I can really relate to how you are feeling about bringing up the issues with your GI. I knew that Remicade wasn't working for me and that my GI in the past increased the dosage, decreased the infusion interval, etc. But I came to a point where I was having to do steroids to get my Remicade and always felt worse after getting it. I also have many other medical issues including Remicade induced lupus problems.

Whether the Remicade is causing the MS symptoms or the symptoms are coming from Crohn's itself is something you need to address. If it means coming off of Remicade, so be it since you said it is no longer working. The one thing you need to think about it is immediately going to another med like Humira while the neuro is trying to get a handle on the MS-like problem. The neuro and GI really need to communicate. Anyway, I have a lot of info on the extraintestinal manifestations of CD because I have so many myself. From a chart published somewhere online [can't find it at the moment], "Up to 3% of patients have non-iatrogenic various neurological complications including peripheral neuropathy, myleopathy, myasthenia gravis, amd cerbrovascular disorders. Incidence usually 5-6 years after onset of disease and associated with other extraintesinal manifestations of the disease."

Posted 10/11/2007 7:32 AM (GMT 0)
I have had CD for 30 odd years and have been fairly well maitained without the steroids. ...however 4 years ago had a severe attack of something....was unable to walk or lift my arms....my balance was gone..when I regained the weak ability to walk with crutches, the vertigo was so bad that I would fall . I have had 2 MRI's which haven't confirmed MS but haven't ruled it out either. My neuro says there are plaques on my brain but that they could be caused by something else. She wants to wait for another major attack before confirming MS....so for now I have "probable MS" .
I've posed this question before and wonder about having one autoimmune disease and developping another one. Doesn't it make sense that if your immune system is overeacting in one part of the body, it would only stand to reason that it could also be overeacting somewhere else. ?
Posted 10/11/2007 2:54 PM (GMT 0)

marie- it does totally make sense that one autoimmune disorder would overlap onto another, whoch would make sense in this situation.

ides- i see how it could be the crohns thats is causeing all this, especially with all the new stuff that i read. im definitley going to bring it up to my GI so he and my neuro can talk. i just gotta figure out how to do it:) and i feel like i am ready to try something else like humira or something becasue even though i just started doing the double dose of the remicade i dont think its going to work, and it hasnt helped yet. i just have to get off these steroids.

momikins- im sorry that you have these symptoms as well, im sorry that all you guys are having problems. i just get so frustrated becasue i was FINE before i started with this whole CD thing and started on the remicade.

andorable- i have had an MRI of my brain, cspine and thorasic spine and for now they are clear. those are what i have to have repeated every 4 months to check to see if i have developed any lesions. my neuro has settled on possible MS but he cant really pinpoint why but he does say that he would feel better of i was off of the cade.

thanks guys for all your responses, once i fugure out how to talk to the doc and once i get the opportunity to i think ill feel better. im just nervous i dont want to seem like i am questioning him, ya know?

well thank you :)

bunny

Posted 10/12/2007 1:38 AM (GMT 0)
Hi

I've been living with Crohns for quiet sometime now - and since having my daughter it relapsed in a very

big way.. I got an abcess which did not heal and is now a fistula - the doc basically said that only remicade

will heal this.. I am a bit off-set on going on this... to date I am not on any meds - only 2 tabs of mesasel and

have worked pretty hard to get to this - but I obviously need to heal this...

Has anyone been on remicade/infliximab for sometime and if you could give me feedback - or if you have had any

side effects?  very nervous about starting this.

Thank you

Jenn

Posted 10/12/2007 2:21 AM (GMT 0)
yes it is the autoimmune casade
Posted 10/13/2007 3:24 AM (GMT 0)

just bumping to see if anyone else had anything else :)

bunny

Posted 10/13/2007 3:37 AM (GMT 0)
Ha, I get what you all say (and I have read) about extraintestinal manifestations of Crohn's. I had crohn's for a year when i started getting the arthritis too - I think of it kind of like the unwanted "free set of steak knives with purchase"!! Then I developed Hashimoto's thyroiditis last year too. Now I am seeing a neurologist (after seeing the gastro- and endo-crinologists and being told my new issues are probably not related to anything I already have). Hmm.. I dunno. It might just be because I'd prefer not to add to the list, but I'd be more than happy to believe the research I've read suggesting crohn's or hypothyroidisim can cause neuro stuff, even with treatment. The neuro tests are freaking me out!
Posted 10/13/2007 9:02 PM (GMT 0)
i know it all freaks me out too. part of what i really believe is that this can sometimes happen with crohns, however uncommon it may be. i feel bad that others have these problems but it makes me feel less of an oddity

bunny

Posted 10/14/2007 12:20 PM (GMT 0)
Hi Bunny If I had questions I needed to know the answers to for my Dr. I would ask. Just write down a few questions and ask them. lol gail
Posted 10/14/2007 4:02 PM (GMT 0)
 

I had the same symptons, and was sure I had MS, I have had 7 resections, plus about 35 other corrective surgerys, I have had Crohns for over 50 years, after test after test, the answer was a simple one, I have had so much damage, I no longer absorbed vitamines, I was cured quickly simply by taking Vitamin shots... good luck....

 

Posted 10/17/2007 3:51 AM (GMT 0)
Bunny- this just came up at UC.  I added a link to your post there and here is a link to their post https://www.healingwell.com/community/default.aspx?f=38&m=941577
Posted 10/24/2007 3:16 AM (GMT 0)
Bunny, I just wanted to let you know I have been going through something very similar. I was just diagnosed with CD last March after a year of trying to figure out what all my symptoms were. Finally after capsule endoscopy found ulcers in small intestines and was finally diagnosed with something. Even before the diagnosis I was having MS type symptoms. I have on and off again numbness and tingling in my legs and arms...alternating sides usually. I have muscle spasms in my eyelids frequently. Shaky hands. Dropping things and weakness from time to time in my legs and or arms where one feels weaker than the other. Also have lots of joint pain which is so annoying. So i had a brain MRI over a year ago before the CD diagnosis and it did show lesions, but the neuro said they didnt look like typical MS lesions and to just have a follow up MRI in a year. Kind of blew me off and said he thought my symptoms were just stress. Nice, huh? SO, just went back for 2nd MRI and follow up. Havent got the MRI results back. BUT- my husband asked if they thought it might be from a vitamin deficiency. Neuro said she didnt think so, but would test to be sure. Well, it turns out I am Vitamin D deficient which can cause lots of tingling, numbness etc....and is very common with CD. If you google Vitamin D deficiency, Crohn's, MS - you'll get lots of info on how the three relate and one can lead to another. I am trying to get in with my gastro to talk about all of this and see if I have developed MS or what...or if just getting a Vitamin D supplement will help. Good luck to you....just thought you moght want to ask about having your vitamin levels checked.

 

Posted 10/24/2007 5:09 AM (GMT 0)
Remicade can have some strange side effects, I was on the Orginal Trials for Remicade, My first infusions had no effect at all good or bad, My second did make me feel somewhat better, My third Infusion (I was the first in the U.S. to have three)  I had every side effect I think you could have, the worse was the muscle contractions, It was like having cramps all over your body, My hands would clench, and I could not open them, My arms would bend up, and I could not straighten them out.  But the strangest thing was My scars, every scar on my body turned Blood red, especially old scars from surgery, My Doctors along with the maker of Remicade, did untold amount of test, and never found, why I reacted as I did. It went away slowly probably took about a month. Now they tell me never take it again.  I really never had any pain with it , just crazy reactions. The Doctors tell me  they have never had any reactions like it.
Posted 10/24/2007 9:54 PM (GMT 0)

i tend to get the strangest side effects from meds, and i usually need the hiighest doses to get a theraputic effect so it would be no wonder to me if the remicade did this to me. or it could be prednisone i was on it for almost a year 60 mg for about 8 months then the taper.

i told my GI about it and he didnt seem to think thats what its from but my neuro says he wont be entirely comfortable till im off of it. i think im gonna do a wait and see approach, i see the neuro again in 3 months and if he still wants me off the remicade im going to have him consult with my GI.

thanks for the information, it really does make me stop and think about all this.

bunny

Posted 10/24/2007 10:50 PM (GMT 0)
I think Remicade is pretty much poison and agree with your issues being from the Remicade.  I have unusual sensitivities and side effects since being put on Remicade. I have only had 3 infusions and evertime I am prescribed something new, something goes wrong, I get rashes, all kinds of stuff. THe muscle aches, my freakin boobs hurt?  I go to the dentist and break out with bumps all over my face? Yeah it's poison in my opinion.
Posted 10/24/2007 11:37 PM (GMT 0)
I might have optic neuritis. Opthamologist diagnosed me a few weeks ago and said to come of the Remicade. Since the idea of going off the Remicade doesn't really appeal to me I decided to get a second opinion, so now I'm seeing a neuro opthamologist. While he agrees that something is wrong he isn't convinced it's neuritis. After I finish the rest of my MRI (started on Saturday but the incompetent resident couldn't hit a vein after 4 attemps to run contrast) tomorrow he'll be able to tell if its neuritis or not.
Posted 10/25/2007 12:07 AM (GMT 0)

ill hope for you that its not neuritis, ill be thinkin of you

bunny

Posted 10/25/2007 12:26 AM (GMT 0)

WOW!  I was just thinking about checking Healingwell to see if anyone was experiencing the MS symptoms, and out popped Bunnypuckers post at the top of the list.  Weird.

Anyway, I have had CD for 5 years and recently went to have a CT scan of my brain since I suffer with migraines.  They originally thought I had had a stroke, so they called for an MRI and found 3 lesions typical of MS.  My doc is sending me to the MS center at Johns Hopkins for an official diagnosis.  On top of they, they did a rheumatoid factor test with was 57, so they are sending me to a rheumatologist as well.  I know a lot of folks with CD have rheumatoid arthritis, but I was surprised to get a Probable MS diagnosis.  I have had bizarre medical issues my whole life, but I didn't think they were connected until now.  The eye inflammation (optic neuritis) started earlier this year, along with the numbness and tingling sensations. Is there anyone else on this board suffering from all three (CD, MS and Rheumy)  of these auto-immune diseases?  I've had just about every extra-intestinal manefestation of CD that you could possibly have.  Right now my Crohns is in remission, but the Probable MS symtoms are still there.  Please advise.

Posted 10/27/2007 5:06 AM (GMT 0)
Home run! I have all 3, but not ms. Psoriasis, reactive arthritis and probably AS, and crohn's.  I was told I might have it and I was freaking out. All my numbness, burning and tingling was on both side of my body and started on the insides of my legs and progressed to my eyelids within 2 months. My memory/concentration was terrible. I started researching on the computer and found out the sx of B12 def with spinal cord involvement. I got a B12 test and it was 136. So after B12 shots for almost 2 yrs now, I am improved/ and or used to it, but have had lots of crohn's related setbacks. One of them arthritis. I started getting worse again and my B12 dropped after getting my first remicade infusion. No docs seemed to think it was the remicade causing it (rheumy, neuro or gi), but if you look up the literature, it says right there to notify md if you have ms or any numbness/tingling. I had 3 more infusions and then stopped because of allergic reaction. Now I am on humira and hoping the same thing does not happen. I am on the B12 shots now every 10 days. Vandy, I have had several folks tell me they were wrongly diagnosed with ms.
Posted 10/28/2007 12:31 PM (GMT 0)
Bunnypucker,

Before I was diagnosed with Crohn's, the doctors thought I had MS. I was experiencing Vertigo, with these funky migraine headaches which would cause loss of peripheral vision. Although I didn't have weakness of any limbs, I did have achiness. I went for an MRI which showed lesions in the brain, and shortly after, they did a spinal tap. It was negative for MS. Then they sent me for brain stem, visual and audio invoking. (It sounds much worse than it is.) I also have great difficulty taking medications. This is very normal for people with autoimmune diseases. The doctor that told me this was a psychologist. My family doctor was getting disgusted that every prescription he gave me, I had wierd reactions to. Finally, after 2 years, I got my diagnosis of Crohn's. After being diagnosed with Crohn's, I tried to take Colozal. When I began taking the full dose of medication, I woke up with hives like I've never had before. My eyes were swollen almost shut. So then they tried the Remicade. After my first treatment, I broke out in a "rash". (More like a chemical burn!) So they gave me meds so that I could tolerate the next treatment. Unfortunately when I took the next treatment, about 10 minutes into it, I quit breathing. The next day, all the glands in my entire body swelled, I looked like I had the mumps! Of course, my GI had never heard of that, and he told me I needed to find someone else to treat me since I wasn't able to take the Remicade. Here it is, almost two years later; my new GI has me on Asacol. He started me on what they call a "geriatric" dose, and I worked my way up.

That was probably more information than what you needed, sorry if it was long.
Posted 10/28/2007 8:41 PM (GMT 0)
I HAD to add to this topic. I have been experiencing the same and came across the world renown Prof. Graham Hughes by accident on an emergency trip to London England.
I had ended in a wheelchair with the jigging jerking, chorea, dystonia, balance and mobility problems, memory and cognitive problems. Blinders of headaches, tingling in hands feet and also muscle wasting in hands and feet.
This professor discovered a condition named after him called "Hughes syndrome". although I tested pos on the DAT scan for Parkinsons they are not convinced but Prof Hughes with accolades from practcally every country is convinced I have Hughes syndrome which is also called 'sticky blood'
He told me that he has seen this constellation in a lot of his patients and has advised me to go on heparin injections for three weeks. Trouble is, here in my own country we have long delays even for an appointment.
I have to wait for another two months for one and prof would have liked me to start straight away.
20% crohnies go on to develop another cluster of autoimmune diseases called Mixed Connective Tissue Disorder and I tested pos for Sjogrens and evidently might have this one too.
There are three others I think, Polymyostytis, Derma something! and a few others.
If you google Prof G. Hughes Lupus Centre London you should find out about him and his work.
The Lupus site here on Healing well know of him etc.
Hope that helps some.
He has seen life changes for people falling all over the place and stuck in wheelchairs by simply going on heparin or aspirin, but he doesnt want me to be madly hopeful but hopeful and thats enough for me.
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