Neurological Issues?

Is anyone else experiencing neurological issues or symptoms? If so, what is being done for it?

Specifics please. That question could run from 'who am i' to' half the time I can't remember the name of the white shaky stuff -oh yeah-salt! I tend to run to smart ass please forgive me. Depression, anxiety, mood swings, self worth issues, self-induced perfectionism...i take relaxation courses, practice breathing and most recently Acceptance and Commitment Therapy (ACT) which I found very enlightening. Try contextualpsychology.org

I am sorry, I didn't mean to be so vague. I have been experiencing numbness in my right leg and arm, surgery for drop foot on my right leg. Ripping and burning sensations when I extend my arm and leg. Numbness on the right side of my face. The neurologist said that it was due to inflammation in my brain due to the Crohn's and I was wondering if anyone else had been experiencing anything similar.
I do deal with the anxiety and depression but the doctor and my therapist believe that is due to having to deal with the illness itself and the isolation, etc.

I'm undiagnosed but most likely have some form of IBD. When I first became ill, I started getting migraines. I'd never had migraines until my guts went crazy, so I am sure the two are connected somehow (I had one migraine from age 0 to 29, and when this illness hit just before I turned 30, I started getting about one migraine per month). I get the "auras" too just before a migraine, the weird visual stuff. So I guess that'd be considered neurological.

Cat-A-Tonic,
Yes, definitely neurological. I have read that it is common for people with Crohn's to have migraines but whether there is a connection or if it's just coincidence they haven't decided yet. I just know that I am grateful that I do not have to deal with that type of horrible pain on top of the Crohn's. Do you have migraines in connection with Crohn's flare ups?

I haven't experienced any recent neurological problems, but I grew up with a mild form of neurological seizures. My body would keep moving and doing things, but my awareness would black out, so I would have no memory of what happened. They only lasted for about 10 seconds with no convulsions that are typically associated with seizures, just brain seizures, I guess. I don't have them anymore after taking medicine for about a year when I was 12, but I remember reading a thread on here once about someone having neurological problems, and their doctor saying there was a link between neurological problems and people with Crohn's.

I Got numbness in both feet when taking Flaygl antbiotic for
about 6 monts as maintenance drug for indeterminate crohns/ U collitis.
gradually got worse and worse but gradually resolved after stopping the drug.
Are you perhaps taking this medication?

No haven't experienced any the only time I got severe migranes with the aura etc was when I stopped the pred, but it was short lived. The inflammation must be bad if you've had a dropped foot, did you have a brain or spine MRI??

archie said:

No haven't experienced any the only time I got severe migranes with the aura etc was when I stopped the pred, but it was short lived. The inflammation must be bad if you've had a dropped foot, did you have a brain or spine MRI??

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Yes, I have had MRI's of the brain and spine. That is how they found the growth on my thyroid that turned out to be Hurthle cells which I go into surgery for on August 8th.
The neuro. doc said that they have found that the inflammation from Crohn's can cause symptoms similar to other immuno deficient diseases such as Lupus, MS and RA. I am experiencing the symptoms of MS but do NOT have it. This may mean that if I can get the Crohn's into remission the numbness, pain and loss of use should stop progressing and may even diminish over time. Which is what I am sincerely hoping for.
I was just wondering if anyone had experienced similar problems and what they had done for it, etc.

dreamintwilight said:

I haven't experienced any recent neurological problems, but I grew up with a mild form of neurological seizures. My body would keep moving and doing things, but my awareness would black out, so I would have no memory of what happened. They only lasted for about 10 seconds with no convulsions that are typically associated with seizures, just brain seizures, I guess. I don't have them anymore after taking medicine for about a year when I was 12, but I remember reading a thread on here once about someone having neurological problems, and their doctor saying there was a link between neurological problems and people with Crohn's.

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I tried looking for threads that dealt with neuro but after several pages I gave up. Should have looked harder. I am sorry, I didn't mean to bung up the board with repeat posts.

I've had a little numb spot at the top of my back, just to the right of my spine, about the size of 1/2 an American dollar bill. It's been there for at least 7 years, probably more.

When my weight fluctuates, my numbness fluctuates. I'm up to about 170lbs do to that evil medication that shall not be named, but had been at 129lbs (5'9"). When my weight is up, I have a lot more numbness.

Right now I have numerous numb spots on my back, my normal numb spot has grown quite a bit. I get strange stretching/pulling feelings if I drive my car more than a half hour. The back of my right thigh is completely numb, as is the outside of my left thigh.

Due to nerve damage from high school, the last three fingers on my left hand goes numb when it feels like and has a line of numb leading to my elbow and sometimes my shoulder.

I have a number of strange numb spots on my tummy that aren't near any of my scars, but I have so many scars there, going in all funky directions, that I just can't figure out what I should and shouldn't feel.

My GP said it looked like MS, but it's not that. I've had the scans, the MRIs and that fun 'taser' nerve test on both arms and legs. My neurologist was impressed with the amount of neuropothy I have. She started me on B12 shots as my levels were too low for her liking. I'd been trying to get back on B12 shots for a couple years, so that made me happy.

It hasn't seemed to have helped as of yet and it's been since November '10. I need to get back into see her, but my Crohn's has been flaring so much that she's not at the top of my list as these things are not debilitating or hurt as much as everything else does right now. Kind of strange how certain parts of our health gets ignored in such a huge way when they'd normally be horrible, but compared to the rest of the pain and issues it's barely worth the time to think about.

I don't know if this counts, but when my digestive troubles first started, I noticed that my ability to use my right hand would go out. I am ambidexterous, so it doesn't matter too much, though it was weird. I remember telling my mother, my hand just died. It's like I couldn't grip or hold anything. The feeling would eventually come back and I'd be fine. That happened a lot during my young adult years. My doctor couldn't find the cause, and said that I didn't need to worry. I get that sensation only once in a blue moon now. I wonder if that was something neurological related to my CD?

Rayne - No need to apologize! I think the thread I read that on wasn't devoted to having neurological problems, but someone's thread talking about the progress of their disease. And he went to his neurologist for a non-Crohn's reason and ended up finding out that they can be related. I didn't mean to suggest you were repeating anything

Andi - Your most reminded me of something that happened before I was diagnosed. About 2 years prior to my symptoms cropping up, I had this weird thing happen where I would wake up in the morning and my right hand would be cramped up into a fist and I couldn't open it without pulling my fingers up with my other hand. I alxo couldn't apply any pressure with it either. Kind of like it stopped working too. It was weird and really creepy. It was kind of tingly afterward too, but eventually went away on its own. It happened for a little while and disappeared as suddenly as it started.

It was slightly concerning to me, but I had no other symptoms and my husband said he'd experienced that before. So, we just chalked it up to falling asleep on top of my hand or something. But, I wonder if it was related after all.

Your situation sounds familiar to mine, Marissa. That happened to me a few years before I was diagnosed.

I occasionally have a little numbness/tingling in the extremities of my fingers, I've never mentioned it to my doctor, I always assumed it was due to poor circulation. It never lasts very long and does seem to happen when I get cold.

I've only ever gotten one true migraine, but I get the auras without the migraine occasionally too. I researched it, it is a neurological condition. I guess I'm lucky, no headaches, but it does worry me a little as the vision going out is pretty scary. I know that Crohn's can cause problems with the eyes, and there is a history of glaucoma in my family, so I worry about it. I know that people with Crohn's are more susceptible to other inflammatory diseases, not sure about neurological too, but it's interesting to see how many of us have other problems.

I've only ever had one migraine in my entire life too. It was when I was in middle school. It happened at the end of the day in my last class period. I got the aura too and I thought at first I was passing out or something. I remembering my mom picking me up and I told her my vision was going away, like tunnel vision, except I was seeing splotchy lights all around. then when I got home the splitting headache started. It was horrible. I remember lying on the floor not wanting to move or open my eyes. So glad I've never had one since then. I can't imagine what it's like for people who get those frequently.

I actually started having progressive neurological issues about 9 months before being diagnosed with crohns. Numbness weakness and nerve pain that over 6 months was affecting all for limbs, and my vision. It was eventually diagnosed through nerve and muscle biopsy as vasculitis which was causing damage to my peripheral nervous system. Once I was diagnosed with crohns my neurologist started to think that the neurological problems were secondary to crohns although she cant say for sure if that is the case. Anyways long story short yes i have had neurological problems with crohns.... and for me the neurological problems have been more severe and be treated more aggressively than the crohns itself.

I hope your surgery goes well. I haven't experienced any problems like that except for severe headaches. Good luck to you!

Thank you, everyone, for responding. Although I am not happy that you guys have to deal with neurological issues, too, it makes me feel better knowing that I am not the only one. It's a bit calming in a way, does that make sense?

Hey I just found this post and I'm curious how your doing and what was decided. On two occasions during a crohns flare I have had neurological symptoms. The first time it was two years ago the crohns was flaring but not as severely and it eventually became. I began to notice over a 24hour period that my left side was going numb. It began in my thigh and went to my face. After 48 hours most the sensation had returned and was replaced by a burning feeling. Within a month I was suffering from a severe flare and after high dose prednisone it settled down and the numbness that they later associated with a migraine was a thing of the past. This year in May I was flaring again. I began to have some facial palsy (a facial twitch and burning on my right side) I awoke about four weeks into it starting, after just having a colonoscopy days before to total left sided numbness. I was dizzy and tired and very disoriented. I went through the weekend like this noticing it most at night or at rest. Tuesday I went to the bc It was beginning to become worrisome. Within a week the feeling was back and replaced by a burning sensation common to that of having frost bite. The doctors all believed I had ms but my MRI came back with no lesions. Three neurologists I spoke to however were confident that if my MRI was clean it was in fact the crohns causing these disturbances. The main thought is that we are still unclear as to what triggers crohns and why we get it in the first place. If it was a virus that created it or is it a neurological issue or is it a response to environmental factors it may be another manifestation of he disease in our bodies. I have found three studies that stated in up to 35% of patients some neurological effects were present as a result of the crohns. With the neuropathy being secondary to the disease.

I have also had neurological problems that started alongside the Crohn's but never went away. I have constant pins and needles in my hands and feet (b12 levels are normal, and b12 supplements made no difference). I also have mild numbness and other sensory disturbances (feeling things that aren't there). The symptoms get worse with exercise.

As well as sensory symptoms, I have vague symptoms like fatigue (which thankfully is lessening now) and 'brain fog'.

Unfortunately for me, my MRI scan was not clear, I do have MS-like lesions, but for the time being they're calling it CIS (clinically isolated syndrome, basically a single attack of MS), with odds of about 50/50 for developing full blown MS in the future.

Rebecca I'm so sorry. Ive been waiting for days to hear what was wrong with me and the idea of having any lesions was so frightening for me I nearly burst into tears when he told me it was okay. Was your MRI done with contrast? My symptoms are so strange. My left side continues to feel as if I have frost bite or sunburn. My fingers in my left hand ache like they've been dunked in ice and are only now getting feeling back. The skin on my face feels tight and I have left eye pain consistent with optic neuritis and my jaw constantly dislocates or feels like it will, especially when I'm tired. My gastro doesnt believe there is a connection but my neurologists disagree. I have been referred to another neurologist who specializes in nerve and ms issues I'll tell you his opinion of the connection when I see him.

My son has crohns, and I do not but I had neurological issues which where autoimmune related. It was called transverse myelitis and I had and MRI with and without contrast. I had one lesion at C2C3 of my spinal cord. My symptoms came on very suddenly and were quite dramatic. I have gotten better and am probably 95% back to normal. TM is an autoimmune reaction and is a one time occurence but the swelling in my spinal cord caused some damage which remains. (My fingers are still numb). So I think the two could be seperate but are related because they both are the result of autoimmune issues. The important thing would be to MRI the brain and spinal cord. I was told the MRI should be done with and without contrast. Good luck at figuring this out, I know how unnerving it can be to have all of these strange symptoms. ((((Hugs))))))

My MRI was done without contrast- meaning the lesions found on my brain were essentially 'scars' rather than anything actively inflamed.

To be honest, it was a relief to know what was going on, because I had been fobbed off for the best part of 2 years with 'it's Crohn's' 'you're anaemic' 'you're depressed'. Once I managed to get the neuro referral things actually moved relatively quickly (about 6 months to complete tests and give a diagnosis).

I'm new to the forum as of today. I was.diagnosed with ulcerative colitis in 91 and after 6 months I had to have my colon removed. I have a J pouch and just had inter stem therapy done. My father has crohns and my mother has MS. When my UC started the neurological problems started also. I had numbness, tingling, burning in hands and feet, and extreme leg and hip pain. They first thought I had MS, but finally after years of tests in 2005 found out it was fibromyalgia. Being on prednisone made my symptoms worse. Coming off was hell!! Look into the fibro symptoms and see if it matches. I take gabapentin at night to help with the burning with my feet. Sometimes it feels like they are going to burn thru the sheets. Good luck and hope this helps!

How are you doing now Angelkissed?

I also have numbness in parts of my body (mid back along spine and left thigh) but only in certain positions (usually laying on my back. left side or standing/sitting too long). I'm also seeing a neurologist. He had me do a nerve test (they tested my lower legs), blood work (checking for diabetes, Rheumatoid arthritis and other stuff I don't remember), and two more MRIs done (this time of my upper and mid back, already had my lower back done, haven't checked the hips yet other than an x-ray). I'll be getting an appointment with the doctor soon to see what the results were.

I've had a lot of pain too in my spine and hips and was told I have arthritis. I was put on Entocort to help with mild inflammation for the Crohn's and a few weeks later my hip pain went away. The back pain and numbness is still there though (although the numbness isn't as bad). So its possible that steroids may help with some of your pain and numbness if you haven't tried them already. Its worth a shot (try Entocort if you can handle it, then you wont have to deal with the side effects of Prednisone).

Angelkissed said:

The neuro. doc said that they have found that the inflammation from Crohn's can cause symptoms similar to other immuno deficient diseases such as Lupus, MS and RA. I am experiencing the symptoms of MS but do NOT have it. This may mean that if I can get the Crohn's into remission the numbness, pain and loss of use should stop progressing and may even diminish over time. Which is what I am sincerely hoping for.
I was just wondering if anyone had experienced similar problems and what they had done for it, etc.

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Hi, I have 12 lesions or white matter in my brain. The nuro have suspected MCTD, Lupus, MS - I get numbness in my left side, arm, torso. I have had this over the last 10 years with no diagnosis - as the lesions are in the wrong part to Dx MS, I have a positive ana - but no other lupus markers. I also get migraines. My problem, is that the neuros haven't linked it to my crohns. The last one I saw - suggested if I wanted to see a link, he would think that it was my mind making me sick - anyway I thought he was a total posh w)(*&er - so I haven't been back since. It's great that your person is making a link - you have given me some hope. :thumleft:

I also have neurological problems that have been going on for a few years before I was diagnosed with Crohns. I'm not sure if there is any connection like there is with my Crohns arthritis, have not seen much online about neuro and Crohns.
Basically I get burning / pins and needles that rush through any part of my body in waves when I'm exposed to warm or hot temperatures or if I am exhausted. Its very aggravating and makes the summer pretty brutal! Aside from that I also get strange little sparks of light that flash in my eyes on occasion more recently. Its all very strange and I guess I should try to get worked up by a neuro, ill bring it up with my GI next week.

Hope you all can get to the bottom of your neuro problems soon so you can get some sort of relief.

Mike...do they look like little fire flies jumping around going on off? I just had surgery in dalllas and forgot how bad that weather effects me.

Yes id say its pretty similar to that, they last only a second or so and can appear anywhere in my range of vision. It happens more often With heat as well when I've got the whole pins and needles stuff going on. Do you have that as well?

Oh yeah Texas weather can be difficult to put up with! I live by Houston and the heat and humidity is killer! It bothered me even before I started getting sick, now its just insane lol. Dallas whether is even crazier, it will be 102 degrees one second and hailing ice an hour later.

Angelkissed said:

I am sorry, I didn't mean to be so vague. I have been experiencing numbness in my right leg and arm, surgery for drop foot on my right leg. Ripping and burning sensations when I extend my arm and leg. Numbness on the right side of my face. The neurologist said that it was due to inflammation in my brain due to the Crohn's and I was wondering if anyone else had been experiencing anything similar.
I do deal with the anxiety and depression but the doctor and my therapist believe that is due to having to deal with the illness itself and the isolation, etc.

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Angelkissed, You are the very first person that has similar symptoms as I did.

I had chronic migraines for 2 years, then they got less intense, after that I had numbness on the right side of my face, most likely it was coinciding with a flare.
That numbness in half my face lasted for about 6 years, then it went away I only experienced that one time just for 1 day in the last year.
Non of my doctors knew what it was, I have had MRI's of my back and head, w/out any findings.
I had that same burning sensation in my right leg, I have numbness in my left foot associated with a Periformis syndrome( Sciatica).
I met one man in the past who was in his seventies who was in my crohn's support group, he had lower back pain too.
I also have Crohn's Arthritis, with peripheral neuropathy.
Recently my doc. found out I had low vitamin d levels.

Yes I've realized that it does happen more in the heat! Alot of times in the shower or when I put my head down. They only last a second or two. I have the pin, needles, and numbing. I also get that bug crawling feeling and theres nothing there.

I had to move to dallas when I got sick, because my parents had moved there. I was going to school when it happened. I had to leave my whole support group of friends that I grew up with. I was there for 10 years! Then NC for 10, and finally made it back to Cali. NC is to hard on my fibro! Espt. the winters.

I don't mean to scare you, but symptoms that become worse in heat are a classic sign of MS. if you haven't already, please beg for a neuro referral to rule MS out. (sensory symptoms that appear when you put your head down are classic MS too)

Thank you for your concern. MS has been ruled out. They thought I had it in the beginning, but because I have so much pain. MS patients don't usually have so much pain. I had every treat under the sun. Hated the nerve test on my legs! I was diagnosed with fibromyalgia in 05.

As Crohn's Disease is characterized by malabsorption and malnutrition, vitamin deficiencies are often a culprit when it comes to neurological issues. Each of you with neurological issues should have the following tested if you haven't already:

Vitamin B1 / Thiamine Deficiency
Vitamin B3 / Niacin Deficiency
Vitamin B6 / Pyridoxine Deficiency or Excess
Vitamin B12 Deficiency - make sure your level is greater than 400 pg/ml otherwise have them test your methylmalonic acid levels!
Vitamin E Deficiency

And here are the references to print out and take with you in case your doctor needs a little convincing:

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

http://uvahealth.com/services/cancer-center/images-and-docs/neuropathy.pdf

http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/systemic/nutrition.shtml

Hi All, I just found these posts about neurological issues. Yes, that is me, I have possible Transverse Myelitis, MS, I thought from Humira as it is a rare side effect and I have unusual side effects to many meds they give you for crohns, and there is not much left to try. I want to try LDN, but doctor thinks it is of no value. I still have my pain in my feet, burning icy cold though they are not cold to touch, burning icy knees, down my legs from knees, pain in lower back, pain rising around my diaphragm and thru my rectum, it is not much fun. I just want to know what it is, and if it is going to go away. Icy feet are not much fun. I tried to reduce the prednisolone but the pain came back very intensely. I would love to talk to anyone who has something similar, and in particular have been on Humira and got it. hugs, Linda:ghug:

hi David, is it possible to get neurological effects from Crohns is there nothing this condition doesnt touch. Plus i read up more on b12, and I am going to get a copy of my results so i see the measurements exactly. Thing is when you go to the doctors they just look at you as if you are nuts, and they dont commit to anything. hugs, Linda

sometimes I get..

Hey all,
My son has Crohn's and I have a number of neurological symptoms no final diagnosis yet! i had a CRVO in my left eye, 2009, (I lost my central vision due to a clot) shortly after I developed a facial spasm from my eye to my lip, which is embarrassing but not debilitating. The doctors have ruled out anything sinister, promised me botox, then took the offer off the table until they find out some more information from the neurologist. Is there any new research on a connection with neurological conditions and crohns?

Interesting thread, i've had issues similar to some of you, i'm being treated with nifefidine as my symptoms of complete numbness lasting for months, increased sensitivity and random attacks that i can only describe as being hit with a hammer or a nail (quite different to needles and pins) were considered firstly to be polyneurpathy, then as a vascular disease, displaying as severe raynauds syndrome. Pretty much been told to take nifefidine 3x daily and see to how i get on, great eh! To be fair i t has been of some success as its not so bad , but not confident that this treatment will continue to effective as it seems to be reducing after only 3 months!

for the same amount of times i have had my crohns i have had this burning sensation in the right side of my head and a wave of tingleness rushing through like for 1 second but the burning remains. i went to see a nero surgeon and he didnt scan me or anything but diagnosed occipital neroalgia (sorry about spelling) just had 2 coarses of steroid injections in the head to sort it but only lasted a short time.