Trigeminal neuralgia = MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Dololo
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Trigeminal neuralgia = MS?

Post by Dololo » Fri Mar 15, 2019 4:19 pm

Hi. I'm not diagnosed, but have an enormous amount of symptoms. My question is about Trigeminal neuralgia (specific nerve pain in face). I've read a few places that this is rarely seen outside of MS.

I have suffered a lot of concerning symptoms for the last few years (after a viral infection) — tingling, pins&needles, numbness, burning feet, muscle and joint pain, fatigue, "electricity" in body, trembling, weakness, headache, "burning ribbons" in left leg and arm, cognitive issues, extremely clumsy, dropping things, balance problems, etc. etc. Most neuropathic symptoms are on the left side of my body, also the Trigeminal neuralgia.

Is having trigeminal neuralgia indicative of MS? What other diseases can cause trigeminal neuralgia, besides MS?

Zyklon
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Re: Trigeminal neuralgia = MS?

Post by Zyklon » Fri Mar 15, 2019 6:42 pm

Welcome,

I kindly recommend you to visit a doctor.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

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NHE
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Re: Trigeminal neuralgia = MS?

Post by NHE » Fri Mar 15, 2019 10:32 pm

Dololo wrote:
Fri Mar 15, 2019 4:19 pm
Is having trigeminal neuralgia indicative of MS? What other diseases can cause trigeminal neuralgia, besides MS?
I don't know how common it is. I don't hear about it much and I've never experienced it. It's certainly not part of the diagnostic criteria for MS.

https://www.nationalmssociety.org/For-P ... g-Criteria

Did you try searching through past posts?

search.php

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Scott1
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Re: Trigeminal neuralgia = MS?

Post by Scott1 » Sun Mar 17, 2019 3:53 am

Hi,

TN is mainly attributed to either a viral cause or compression of a specific nerve. It is not easy to solve. Given all your other issues, I think you should see a neurologist. I wouldn't wait.

Regards,

Jaded
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Re: Trigeminal neuralgia = MS?

Post by Jaded » Mon Mar 18, 2019 1:46 am

Hi Dololo

I am sorry to hear that you have TN. I was diagnosed with MS many years ago - the TN happened in 2014.

I am echoing what my fellow TiMS members have said above - please do go and see your doc and ask to see a neurologist.

Best wishes and let us know how you get on.
J

Dololo
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Re: Trigeminal neuralgia = MS?

Post by Dololo » Tue Mar 19, 2019 2:48 pm

Thanks for your replies. I have seen a neurologist, he wanted me to do an MRI, but still trying to solve the issue of how to cover it (health insurance doesn't cover.)

I tried searching the forum, but didn't find any specific answers to this. I find my symptoms concerning, but I've had a few doctors claim it's "just depression" so I don't know what to think. When I read about the "face pain" actually having a name and being a symptom of MS I got curious if this is an indication that what I'm suffering from is indeed MS, or if TN can appear with other illnesses too.

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Scott1
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Re: Trigeminal neuralgia = MS?

Post by Scott1 » Tue Mar 19, 2019 10:35 pm

Hi,

I don't have it so I can't speak with the authority of personal experience. There are a scattered number of reviews that link the pain to herpes viruses. I imagine it would be similar to how herpes zoster causes painful blistering of nerve endings in shingles.
I do take 2x500mg of valacyclovir each day as way of controlling EBV infection (same viral family).

It would take a little while to be effective but, if your doctor is open minded, you could trial it and see if it makes a difference.

Regards,

Zyklon
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Re: Trigeminal neuralgia = MS?

Post by Zyklon » Wed Mar 20, 2019 4:04 am

An MRI is a must in your case.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

Dololo
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Re: Trigeminal neuralgia = MS?

Post by Dololo » Wed Mar 20, 2019 1:58 pm

Thanks for the EBV info, I did have that infection in my teens. I will look further into it, and the medication you recommended. I know EBV is a b*tch and can trigger autoimmune issues and reactivate.

It's hard to get an MRI when I have to pay for it myself... It's very expensive to put it mildly. I will try to figure out a way. I have been sick for 3 years now, really just want answers 😢

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jimmylegs
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Re: Trigeminal neuralgia = MS?

Post by jimmylegs » Wed Mar 20, 2019 4:41 pm

hi this is super old research, but a thought

TREATMENT OF TRIGEMINAL NEURALGIA WITH VITAMIN B1 (THIAMINE HYDROCHLORIDE)
https://jamanetwork.com/journals/archne ... act/648717

the protocol i used successfully shortly after msdx was a multinutrient protocol which included a lot of vit B1. specifically, 300mg before each meal and at bedtime. it worked like a charm.*

i don't like suggesting isolated b vits so if you think it could be worth a shot, try blending the b1 with a high potency b-complex. caution: avoid exceeding 100mg of vitamin b6 from supplements daily.

*fwiw this protocol worked practically instantly for me - but only up to a point. i had already done permanent damage. long term, the nerve damage is not a huge drama but was definitely an adjustment to a new normal.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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NHE
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Re: Trigeminal neuralgia = MS?

Post by NHE » Thu Mar 21, 2019 12:01 am

Dololo wrote:
Wed Mar 20, 2019 1:58 pm
It's hard to get an MRI when I have to pay for it myself... It's very expensive to put it mildly. I will try to figure out a way. I have been sick for 3 years now, really just want answers 😢
The Multiple Sclerosis Association of America (MSAA) offers an MRI assistance program. They will help pay for your MRI. All you need to do is apply.

https://mymsaa.org/msaa-help/mri/

Dololo
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Re: Trigeminal neuralgia = MS?

Post by Dololo » Thu Mar 21, 2019 6:46 am

Re: B1, thanks for that. I'm taking a vitamin B complex daily, plus extra folate and other cofactors for B12 since I get B12 injections almost weekly. I'm aware of being cautious of B6, it's only a small amount of it in the B complex. I can try supplementing with extra B1 in addition, and see if it makes a difference on the TN.

Re: MRI and insurance, I'm not in the US, so that help will not apply to me. But thank you for caring, and maybe the info will help someone else. I'm in a bit of a complicated situation, temporarily living in a country other than my home country. I might have to wait until I'm back home to get a proper evaluation, incl MRI 🙁

Zyklon
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Re: Trigeminal neuralgia = MS?

Post by Zyklon » Thu Mar 21, 2019 7:27 am

Tough situation, I wish you the best. If you are Syrian, maybe ask for assistance at a Turkish embassy? As I know you can have your MRI for free in Turkey.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!

Dololo
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Re: Trigeminal neuralgia = MS?

Post by Dololo » Fri Mar 22, 2019 7:49 am

Thank you. I'm from Europe, currently an international student in Africa. I will probably get an MRI that's covered when I go back home. Until then, I'm trying to cope as best I can, and try to figure out if there are any other illnesses that can give the same symptoms, that can be tested more easily while I'm here. Again, thanks for your replies and support :-)

Jaded
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Re: Trigeminal neuralgia = MS?

Post by Jaded » Sat Mar 23, 2019 5:04 am

Hi Dololo

TN would be unmistakable if you had it. It's called the suicide disease for a reason. You would not be able to eat, talk when at its worst. It's like having and road digger trying to pull your tooth out. It is a flareup disease and yes I agree with Scott1 about the link with Herpes simplex. You can feel it creeping - some days would be trickier to brush your teeth than others. I take acyclovir daily and that has helped keep the flares calmer (thankfully).

My first symptoms were feeling like I had little electric shocks when I put my cleanser on at night.

It's interesting that you take B12 - one of the things that helps mine is a B12 patch. Also try rinsing your mouth with water that has a few drops of oregano oil (with p73 is the best one in my opinion).

Best of luck

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