This Is MS Multiple Sclerosis Community: Knowledge & Support

Anybody developped cranial neuropathy from MS? It seems not as frequent as i thought... but does anyone have that?

Well, Filmmaker, I wasn't quite sure what you meant by "cranial neuropathy" since I didn't remember that term from my several years of wallowing in MS research.

So...I did a quick google search and pulled up some info about "cranial nerves." It appears that the term of "cranial neuropathy" is an umbrella term for the more specific medical issues that MSers (and also non-MSers!) suffer due to damage to those nerves, like Optic Neuritis, Bell's Palsy, diplopia (double vision), Trigeminal Neuralgia, and lots more.

Here's a good generic definition:


There's much more detailed info about the cranial nerves and MS on one of my favorite MS sites:
http://www.mult-sclerosis.org/cranialnerves.html

Maybe these definitions will bring more responses. It appears that Optic Neuritis, one of the most common MS symptoms, is one of the "cranial neuropathies."

Or not. Feel free to correct me.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Hi there. Such nice people on this thread.

If you mean damage to cranial nerves, yes, I have had that sort of thing from the get-go. My impression is that it's not uncommon. I know quite a few people with brainstem issues. I don't know your history -- have you ever tried IVIg?

(Euphonia, I think there's a jello mold for that. Did I ever tell you it turned into a tradition at my daughter's school -- we were the ones who brought the brains for potlucks? And I have *you* to thank!)

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hey thanks for the replies, yes I know optic neuritis is part of the game of MS... I have no nerve damage per se (meaning no permanent loss of vision or hearing or whatever, and I do NOT use sterioids or any medication) but I have these weird paresthesia on my cranial nerves...
Blueyes, if you have experienced that, did it get better? Did IVIG help? i have read about it and was considering maybe to give it a try but still wondering if this is really effective in doing anything... I am sooooo sensitive to medication that I really research everything before swallowing it... I chose natural treatments as much as possible...

Hi again, FM,

I'm wondering if you can describe that. Do you think you can identify paresthesia on your specific cranial nerves? And which nerves? On ones that do not involve vision or hearing?

If you put it that way, I bet I get just as many weird twitches, twinges and tingles on the cranial nerves as anyone. Of course. I've just never heard the term "Cranial Nerve Paresthesia" before.

One of my most recent ones is the major left-sided scalp tingle I got when I started taking B12 a few months ago. It's died down now that my body's getting used to the B12, but for the 1st month or so it was so powerful it made my whole body shiver until I peed my pants. Seriously.

I love it when I discover a brand new symptom name, though!

P.S. If someone would help me find a site to host my pics, I'd post the infamous Brain Jello that I made for my family after my dx years ago that bluesky is talking about.

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

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NHE

NHE to the rescue!

Euphoniaa made a brilliant jello brain side dish to "help" people understand MS. I can't remember, what did you use to represent lesions? Grapes? Pistachios? Slices of kiwi?

My children loved the idea and we took the tradition to my daughter's high school for potlucks. Obviously the brainy family.

(Of course, we are also the ones in danger, zombies, 5k run).

I am tired right now and have a jack russell on my lap so I can't write more, but filmmaker I will come back and talk about IVIg.

eurphonia, yes cranial neuropathy does exist, not only in MS but also lupus, behcet, ... it's just the same as neuropathies we feel in arms and legs... I have that on all my cranial nerves including optic and ear nerves, all of them... so it's weird tingling, pressure, bruning, weird sensations....Today I increased my intake of activated charcoal, and it seemed to help so i don't know if it's coincidence or not, i will keep doing that and keep you posted...

I forgot I said I would say something about IVIg. It works great for a certain subset of people, but not for others. You would know on the first infusion if you were going to benefit from it. From the people I know, it seems to be effective for people who are having a very active and disabling course. It is not an immune suppressant. It actually enhances and confuses the immune system. It has some very serious side effects. I would not use it lightly. But for some people it is amazing.

http://www.msadvances.com/benefits.php3

There are huge differences among the IVIg brands. If a person uses it you *must* make sure you have a top brand and make sure the pharmacy doesn't switch at the last minute.

http://www.biorx.net/IVIG_chart.pdf

It was very annoying that they would try to switch for the cheaper scary brands despite my doctor's orders to stick with the top ones. The substitutes were the main reason I had serious side effects. You can google it and find out more.