Crohn's & neurological issues?

[nogutsnoglory]

I was wondering if anyone has any neurological problems and whether any of the crohn's medications have helped? I am not sure if neurological issues are an extra-intestinal manifestation or not.

I have tingling, muscle aches, pain zaps, and strange sensations when I or someone else touches my skin. A soft caress to the face can feel like a thin touching of a knife. Basically these are not normal symptoms.

 

[JennaRae]

I had issues like this and was told I may have fibromyalgia. Maybe this is something you could look into.

 

[ctrl z]

B12 deficiency can cause neurological problems.

 

[nogutsnoglory]

My b12 levels are fine but was told I could have secondary fibromyalgia. Fibromyalgia is hard to diagnose but usually it's in an otherwise healthy person without problems. I have crohn's so I don't think they would diagnose me with fibro.

 

[D Bergy]

My son had similar symptoms when he stopped taking Prozac. Are you weaning off of it?

Dan

 

[missylock42]

I lost my eye site in right eye from Crohn's

 

[nogutsnoglory]

Not waning off of Prozac. Missy that's horrible about the eye. How scary!

 

[David]

With symptoms like that, it sounds like it'd be worth asking a GP for a referral to a neurologist.

If you're experiencing fibromyalgia, in my opinion, trying a couple months of supplemental magnesium under the care of a medical professional is worthwhile since Crohnies are chronically deficient and it can lead to muscle pain.

 

[nogutsnoglory]

I was told I probably have secondary fibromyalgia but that it's probably a result of crohns. I would like to see a neurologist soon.

I have been taking magnesium but not sure if its being absorbed. I should test for that. Do you know where in the gut it typically absorbs?

 

[David]

It mostly absorbs in the terminal ileum.

Just because they think it is, "secondary to Crohn's" doesn't mean it can't be dealt with. I wouldn't be surprised if it is secondary to Crohn's as Crohn's often leads to magnesium deficiency. Obviously your issues may be something other than Mg deficiency, but it's definitely something to try.

The problem with the serum test for magnesium (what your doctor will give you) is that it is, well, terrible. The body does everything it can to maintain a static serum level including robbing it from the bones and muscles.

How much magnesium have you been taking and for how long?

 

[nogutsnoglory]

David, thanks for this helpful info. I know my terminal ileum was removed so I do wonder if magnesium deficiency is an issue. It's a shame there isn't a good test. I have supplemented with a pill that meets 100% of the RDV. I am not sure how many milligrams that is. I wonder if I'm
even absorbing it. Do they offer magnesium injections?

 

[David]

How long have you been doing it or how long did you do it? And look and see how many milligrams it is.

Had your ENTIRE terminal ileum been removed or just a portion?

 

[nogutsnoglory]

I am taking 400mg of magnesium albeit not consistently and sometimes just 200mg since its 4 pills and I already take so many. I have been doing it for about 6 months now.

I think most of or the entire terminal ileum was removed.

 

[nogutsnoglory]

Just an update I got an Electromyogram (EMG) and Nerve Conduction Study done. It didn't find any damage to the major nerves but the doctor said small nerves could still be affected.

The doctor said he doesn't know what's causing it and prescribed neurontin. I doubt ill take it since I'm wary of meds and its crazy to take a medication when not even diagnosed with a problem to treat.

This is so frustrating I need to get to the bottom of this issue. I hope they don't schedule more procedures because the nerve test hurts and felt very uncomfortable!