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Any Ucer's out there get nerve issues?

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Posted 11/9/2018 3:43 PM (GMT 0)
Only been diagnosed for a year and half but I am getting some new symptoms that might be unrelated. However, I have read that UC patients get nerve damage so I am not so sure. I have been getting a tingling in my left leg as well as some brain fog and unsteady feeling/scattered. Anyone else experience any of these symptoms? I know we can be vitamin deficient, maybe it's something to do with that?

Side question anyway in Canada to get a vitamin level test? And if so how do I get one? My GP sucks won't do anything really. Maybe my GI will?

Kind Regards.
Posted 11/9/2018 5:59 PM (GMT 0)
Yes, we've had a number of posts over the years with folks with Peripheral Neuropathy like complaints (tingling in their extremities). I'd always make sure you aren't pre-diabetic or diabetic as that can cause that too. Here in the USA, we'd get the vitamin-based tests ordered from our primary-care (or general practitioner) doctor.
Posted 11/9/2018 6:02 PM (GMT 0)
Got checked for being diabetic and all good. I just have a mild tingling in my left thigh, nothing painful or serious. All my blood work looks good. So without finding a cause I am thinking either a vitamin issue or a UC issue or perhaps there linked?
Posted 11/10/2018 4:28 PM (GMT 0)
I have been through the same thing. I still get numbness in my feet from time to time and random pains or twitches. I spent a lot of time and money researching on my own and seeing several doctors. I don't have any answers after MRI and blood work. Check your B12.

My neurologist ended up putting me on cymbalta...it is used for peripheral neuropathy and I figured it would be good for combatting the anxiety all of the weird symptoms were causing me. I rarely get pain anymore but the numbness pops up here and there. My own non-expert belief is that there is some sort of nerve signaling issue that results from structural or bacterial changes in the colon. This is either a cause of anxiety or some other signaling issue. The brain and gut communicate back and forth. My PC physician said it is likely systemic inflammation or anxiety due to all the important chemicals produced in the gut. I also can't rule out a reaction to mesalamine.
Posted 11/10/2018 5:51 PM (GMT 0)
See your GP for this...because UC isn't an automatic link.

Ask your GP to test for B and D vitamins and for nerve conduction tests or whatever else could possibly show what's going on.

Maybe try not to say "in canada" all the time regarding stuff.....

q
Posted 11/10/2018 5:57 PM (GMT 0)
I would get this also. Before I was diagnosed I had terrible trouble with tingling and burning pain in my hands was give amitriptyline for it.
Posted 11/12/2018 3:57 PM (GMT 0)
I've experienced the burning/tingling/numbness, without a doubt. But I've only experienced it during HEAVY flares, and while being on Prednisone.

I had every test in the world run on me (during my 2 month hospital stay) - They checked me for everything under the sun and found nothing. Ultimately, they prescribed me Gabapentin and Celebrex. I can't say for sure what did or didn't help, since I was on about 15 prescriptions daily and felt like crap consistently.

Regardless, as my flare calmed down, so did the more extreme symptoms. Like the joint pain and the tingling feelings...
Posted 11/14/2018 8:30 PM (GMT 0)
Before i got rushed in for my flare up i used to wake in the night with serious pin and needles in my arms , my hands have always shown sign of bad nerves but since my hospital stint my hands shake uncontrollably and am shakey a bit all over im hoping its down to the prednisolone but it could be just down to my uc ....
Posted 11/14/2018 9:33 PM (GMT 0)
Yeah I think UC is a bit more mysterious than it gets credit for, really. It's caused me so many non-gut related issues. The pins/needles feeling in my hands/feet (also a burning sensation too?), lesions on my skin, random itching on my forearms (ONLY), dizziness, joint pain, cottonmouth. I also lost about 50% of my hair because of it...

My saddest issue with Prednisone is this: the hospital kept me on it for too long. It wasn't working and I guess when a patient doesn't respond to it, they need to be tapered off immediately because it can become dangerous. It became dangerous because I have CMV (which none of us knew, yet). It made the CMV come out of hiding, and it began attacking my liver. Around the same time, they tried to administer an emergency infusion of Remicade, which I ended up being allergic too. Double trouble for my liver. The organ damage destroyed me. It caused my feet/legs to swell so bad that they had to keep the compression pump/sleeves on them 24/7, and had to give me a shot in my stomach everyday in fear of blood clots.

Once the swelling came down, my left ankle never returned to normal. It stretched my veins out so bad that there's just permanently too much blood flow to the region. There's also some pretty insane stretch marks there, it looks like my foot was pregnant with twins.

I'll never let anyone put me on Prednisone again. I know Tacrolimus is a pain in the rear because you need weekly blood tests, but I don't care. It saved my life, really, because it allowed me to stay off of Prednisone.
Posted 11/14/2018 11:44 PM (GMT 0)
Tingling can be reduced and resolved by chiropractic care. It could be from an old injure, or habits such as bad posture or seating. Did you ever fell or have injured your back or leg? I have learned from my chiro that an old injure always came back if not treated on time. Also, I believe it is related to our gut and spine. I live in Canada (Ontario) close to the border with Michigan, and have a great chiro in Detroit area. It is little expensive (about $45 per visit) but helped me with many issues (migraine, back-pain, vagus nerve damage, atlas adjustments, and many more).

I am not sure about vitamin testing, but this is something that you can look into
https://nutrifitcanada.ca/contact-nutrifit-canada/
Posted 11/15/2018 12:34 PM (GMT 0)
Yes. I suffered from paresthesia of the feet. The UC was an indirect cause of it, the primary being the use of Flagyl. I was on that blasted antibiotic for almost a year! Good news is that once I stopped taking it, eventually the paresthesia went away, albeit a long time..

I feel nauseous just thinking about that metallic aftertaste. Blech.
Posted 11/15/2018 12:49 PM (GMT 0)
You don't mention what meds you take. That is something to look into.

Some can cause nerve problems, you may want to ask the dr about.
Posted 11/15/2018 3:15 PM (GMT 0)
Are you on prednisone? The symptoms might be pred-related.

My husband developed mild tingling/numbness in foot / leg while on prednisone and various other biologics. Ultimately ended up seeing neurologist who diagnosed idiopathic small cell neuropathy. Off of prednisone it hasn't gotten worse, but hasn't completely gone away either. He thinks the prednisone may have been masking the symptoms.

There are different views regarding levels of Vitamin D, Vitamin B12 and B6. Neurologist ordered the labwork for the vitamins. Husband had high B6, which is odd, but maybe contributed to the neuropathy. He was on a bunch of different Bs and Ds for awhile -- now down to B1. You want to be careful self-medicating on the vitamins. The challenge is finding a doctor who is comfortable looking at the vitamin issue and levels.

There had been some old studies associating UC with neuropathy. Different docs have different views on that.
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