Facial twitch and Numbness and tingling

[Staceyscarlete]

Okay so have any of you ever had any numbness or tingling in your body that could not be linked to meds. I have now had his happen to me twice. Both times I was having a flare but was on no meds the first time. I have also had flares and been on pred and imuran and not had this happen. My MRI and CT scans show no tumours, hemorrhages, or signs of stroke or ms. There is a twitch on my right cheek and i have also got pins and needles in my whole left side that have been there for nearly 7days now. My iron is fine and my B12 is not low but borderline I am having shots for it. Neurologists are linking it to crohns but my gastro has never seen this. Has anyone else had this happen?

 

[Rebecca85]

I would hazard a guess that it is your borderline b12. How long have you been having shots for it?

For the record- I have had numbness and tingling for over 2 years, b12 normal (and tested at least 3 times!) but my MRI did show signs of MS so we are attributing it to a single MS like episode.

Though as your tingles are on one side (mine are on both) did they check your spinal cord? Sometimes symptoms on one side of the body can be caused by something (like inflammation) interrupting the passage of nerve signals through the cord.

 

[Staceyscarlete]

Thank you,
My b12 was 133 so not high but not low. I got a shot on Wednesday and it didn't help. Ms was ruled out by a neurosurgeon who was kind enough to look at my images. Since the neurologists weren't moving quick enough to get me an appointment. My head is extremely foggy especially on the left side and I feel very dehydrated though I've been driving constantly. I have sharp head aches that feel like a brain freeze. They come and go quickly. I just wonder if this something others have ever struggled with as a result of the Crohns. My meds have also been ruled out as I was on none the first time this happened and I've been on meds and not had this happen and I am on high dose prednisone which is what would be given to reduce inflamation that would cause this.

 

[David]

133 is absolutely low for B12. Crazy low. The current reference range they use is junk. According to this source (which is a good one) then 50% of people between 200 and 400pg/ml are actually deficient in vitamin B12. Point being, you have to increase your level 227 points before you have a 50% chance of not being deficient. As I'm not a fan of flipping coins when it comes to health, you want to get your level above 500 or have your doctors test your methylmalonic acid and homocysteine levels (good luck with that) to find out if you really are deficient at the higher levels. Since most doctors will not test for those, get your level above 500 pg/ml.

If they didn't have you on loading doses of B12 you probably need them. B12 deficiency damage can be permanent if it is not properly treated in time. Get your level up and FAST.

 

[Staceyscarlete]

Thanks. I just saw your post. I'm having shots once a week. It has been way lower though, it was at 98 last year. I was tired but this didn't happen. I'm getting them anyway hopefully it will help with the recuperation. I have an appointment to see a neurologist this week so hopefully they can give me some insight.

 

[Jennifer]

Hi Staceyscarlete! I've been having a similar issue where my back tingles and goes numb between my shoulder blades while sitting and standing and my left thigh goes numb while laying on my back or left side and sometimes sitting. My b12 levels are in the thousands since I've been getting shots and I've been on Entocort for about 2 months now and have only noticed a slight decrease in the numbness in my thigh, most likely from the Entocort as my hips don't hurt as much anymore either. Arthritis showed in my hips and back in x-rays. I recently saw a neurologist and he wants to do an MRI on my neck and mid back, do a nerve test and have blood work done to check for Lupus, rheumatoid and other stuff. We all think its nerve related. If those MRIs show nothing then they'll do my hips next to find out which nerves are being affected.

As far as whether or not its Crohn's related, I have no idea. All I know is that this didn't start happening until I started care giving for my grandpa in early 2011. The numbness eventually spread and during that time I was told that I was in "clinical remission" which is still remission but with some minor issues with inflammation (in my case anyway). So was it caused by stress to trigger an almost flare or is it an injury from lifting wobbly grandpas over and over? We'll eventually find out the cause but I'm waiting on my insurance to approve the tests before I can see my neurologist again. :/

Do your symptoms change from sitting, standing or laying down? Do they go away or does it dissipate at all?

 

[Staceyscarlete]

So the neurologist says b12 is unlikely because it would occur in my entire body not just on one side but that taking the shots is still a good idea. The M S is still on the table which is very scary. Again I'm being told that with Crohns being such a complex disease there is a chance that this is how I react due to severe exhaustion but they aren't certain. Now I'm waiting for an MRI and a nerve exam to determine the extent of the damage that this episode may have caused. I'm still on the prenisone though it seems to be working a little slower this time to get me back to normal. My blood work was okay except for the high levels of white blood cells and inflamation that come with a flare. Sooo now for another few weeks I wait and send out positive thoughts to the universe that it's something fixable.

 

[Irene3]

Hello Stacy. I don't know about numbness, but involuntary muscle spasms can be from spinal...and crohns inflammation can press on the spine, as my gi told me when I asked about back aches. What you were saying about exhaustion could be true too, I'm not sure. Headaches...if you feel dehydrated, then you prob are. My gp constantly tells me to drink more water, as Iv had many headaches, and have candida with the crohns, and take meds for that too. I also had an MRI, because my headaches felt more severe on one side, but thankfully everything is normal, which left dehydration and candida. Bacterial and fungal overgrowth is common with crohns, so you could have that as well. And high doses of pred only help fungal/bacterial overgrowth flourish. Hope you feel better soon!

Crabby...sorry to hear you Havnt had your MRI. Hope all goes well, and your issues are resolved too. I remember you writing on one of my posts that you were going to see a neurologist. It's incredible how many extra intestinal manifestations crohns has:/ anyway, best wishes xoxo

 

[Johnnysmom]

I had transverse myelitis which is an isolated immune reaction. I had a lesion at C2,C3 of my spinal cord. It was picked up by MRI. I had twitching and numbness in my face. My B12 was 247 so a bit low too but Dr. didn't feel it was an issue. I had lots of other symptoms too though. I would say it could be an isolated immune issue. Record your symptoms and make sure to check in with a neurologist if they get worse. I still have days where I have weird numbness or tingling but the Dr. says anything new that persists over 48 hours warrants a phone call. I get yearly MRI's to check for MS as well.

 

[David]

With your B12 levels you could be experiencing subacute combined degeneration of the spinal cord which can lead to lesions on both the spinal cord and brain which then mimic MS and would also coincide with what the two wonderful people above said.

I realize I'm no neurologist but I know B12. And of course folate comes into play with SCD as well.

Johnnysmom, please provide this paper to your doctor and see if they still feel 247pg/ml isn't a big deal. I'd hate for you to have an untreated deficiency

 

[Staceyscarlete]

Thank you all so much for your support and responses. I'm seriously drained and I'm a really happy positive person so that's saying a lot!! But hearing that MS is still a worry freaks me out. I am however relieved to hear your answers. The first time this happened I really blew it off thinking I was sick and tired and that's why my body reacted the way it did but this happening again and for a longer duration makes me nervous. I'm really keeping my fingers crossed that the MRI is normal or at least shows something that is explainable and fixable. I just want to get a doctor willing to actually listen to what I've been feeling and not rush me out of their office because I just want an answer.

 

[Staceyscarlete]

So I had a b12 shot yesterday. This time in my left arm. At first it made no difference but by the end of the night I could feel a lot more pain in the parts of my arm that had felt very weak. Granted I am noticing every night the pain is worse and the feeling begins to retun slightly. My face is better a well the twitch is next to gone but I am having some trouble with my jaw and neck. Who know who knows. I'm going back in again next week for another shot and here's hoping today and tomorrow are both better days