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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Re: Trigeminal neuralgia = MS?

Post by Dololo » Sat Mar 23, 2019 6:08 am

Yeah it gets really bad at times. It's one of my worst symptoms.

B12 deficiency can lead to nerve damage, so I'm hoping the injections will help me over time. But I'm not sure my B12 is low "enough" to cause the amount of symptoms I'm experiencing...

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NHE
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Re: Trigeminal neuralgia = MS?

Post by NHE » Sat Mar 23, 2019 2:07 pm

Dololo wrote:
Sat Mar 23, 2019 6:08 am
Yeah it gets really bad at times. It's one of my worst symptoms.

B12 deficiency can lead to nerve damage, so I'm hoping the injections will help me over time. But I'm not sure my B12 is low "enough" to cause the amount of symptoms I'm experiencing...
Dololo wrote:
Fri Mar 22, 2019 5:05 am
B12 level was 205 two months ago (reference lowest level 137 in this country) and I'm now on B12 injections.

B12 at 205 pg/mL is fairly low. Nearly 5 years ago I was B12 deficient at 247 pg/mL. A desirable range for B12 is 500-1000 pg/mL. Unfortunately, taking B12 once you've had symptoms for a while often doesn't fully reverse symptoms unless you caught the deficiency early. Please see the following paper which discusses B12 deficiency induced subacute combined degeneration (see the free full text). Note that some people experience a better response to B12 injections if they use the hydroxocobalamin form instead of the cyanocobalamin form.

By the way, a good source of info on B12 is Sally Pacholok's book "Could It Be B12? An Epidemic of Misdiagnoses". There's also a topic where much has been posted on B12.


Potential outcome factors in subacute combined degeneration: review of observational studies.
J Gen Intern Med. 2006 Oct;21(10):1063-8.
  • BACKGROUND: Subacute combined degeneration is an acquired myelopathy caused by vitamin B12 deficiency. Therapy with B12 leads to improvement in most but to complete recovery in only a few patients. Prognostic indicators in subacute combined degeneration are unknown; therefore, predicting complete recovery of neurologic deficits is challenging.

    PURPOSE: To identify potential correlates of outcome and to generate hypotheses concerning predictors of complete resolution of neurologic deficits in subacute combined degeneration.

    DATA SOURCE: We searched EMBASE (1974 to October 2005), MEDLINE (1968 to October 2005), and references from identified reports. REPORTS SELECTION: Reports of patients with subacute combined degeneration containing results of magnetic resonance imaging (MRI) and description of outcome and 1 patient treated by the authors.

    DATA EXTRACTION, SYNTHESIS: We extracted data from 45 reports and 57 patients (36 males, 21 females; age range: 10 to 81) with a diagnosis of subacute combined degeneration, and estimated the strength of association between clinical, laboratory, and radiological factors and complete resolution of signs and symptoms.

    RESULTS: Eight patients (14%) achieved clinical resolution and 49 (86%) improved with B12 therapy. The absence of sensory dermatomal deficit, Romberg, and Babinski signs were associated with a higher complete resolution rate. Patients with MRI lesions in < or = 7 segments and age less than 50 also appear to have higher rates of complete resolution.

    CONCLUSIONS: B12 therapy is reported to stop progression and improve neurologic deficits in most patients with subacute combined degeneration. However, complete resolution only occurs in a small percentage of patients and appears to be associated with factors suggestive of less severe disease at the time of diagnosis.

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zen2010
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Re: Trigeminal neuralgia = MS?

Post by zen2010 » Fri Mar 29, 2019 2:32 am

Dololo wrote:
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.
Hi Dololo,

Your story sounds like mine.
I was working in Asia when I had TN which led (hope it won't be the case for you) to an MS diagnosis.

One night, TN was so strong that I tried to jump through my window (fifth floor) .
Fortunately, the pain was so intense that I could barely move, so I suffered a few hours in my bed but, at the end, I am still alive.

The following day, I told my boss I had to go back to EU to get an MRI + full checking.

I understand that leaving your studies for a while may not be pleasant, but I really think you should prioritize things in your life.

vesta
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Re: Trigeminal neuralgia = MS?

Post by vesta » Mon Apr 01, 2019 10:27 am

Dololo wrote:
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?
Greetings: I posted the following on my site MS Cure Enigmas.net https://www.mscureenigmas.net/ as well as on ThisisMS.

QUOTE "][Venous compression as a cause of trigeminal neuralgia].
[Article in Russian; Abstract available in Russian from the publisher]
Shulev YA1, Gordienko KS1, Trashin AV1, Pechiborshch DA1, Rzayev DA2.
Author information
Abstract
in English, Russian
CONCLUSION:
Venous compression can play both independent and assisting roles in the TN genesis. When exploring the trigeminal nerve, examination of the proximal trigeminal nerve is of particular importance, with paying attention to veins that may be a compression factor. In the case of isolated venous compression, the MVD surgical technique has some peculiarities, in particular coagulation and resection of veins compressing the trigeminal nerve root entry zone.

There it is. Veins. Trigeminal Neuralgia caused by Venous « Compression ». CCSVI - MS originating in Venous « Stenosis ». The same disorder, manifesting differently. In Trigeminal Neuralgia a severe venous muscle "spasm" crushes the nerve. In MS the venous "spasm" sends blood back jetting into the Central Nervous System. I won’t look further than that. I knew nothing about TN until just now.

So for TN victims, check out my Seven Steps to MS Health.

Tags : Trigeminal Neuralgia, TN, Dr Owiesy, CCSVI –MS.ThisisMS.com, dexamethasone, lidocaine, thiamine, Vit B12, coenzyme Q10, ISNVD END OF QUOTE

QUOTE MY SEVEN STEPS TO MULTIPLE SCLEROSIS HEALTH

1. ENHANCE BLOOD/CEREBRO-SPINAL FLUID CIRCULATION

My analyses and emphasis on the fluid circulation issue set me apart from other alternative healing sites. I insist it is of vital importance.

If had known that my MS is essentially a pathology characterised by obstructed central nervous system fluid flows – blood and cerebrospinal fluid – I wouldn’t need a cane to walk today. That one simple concept changed my life forever, but it came too late to save me from handicap. It came in time to slow progression.

My research has concluded there exist three fundamental fluid obstructions. 1) skeletal obstructions of fluid flows – bones, ligaments, muscles, arteries. 2) spasms in the veins’ middle smooth muscle layer which obstruct blood flow and 3) stenosed veins in need of being ballooned open to overcome interior obstructions, the CCSVI issue.

Before undergoing venoplasty for CCSVI by an Interventional Radiologist (issue 3), I think one should verify that there is no skeletal obstruction (issue 1). The best diagnostic tool for that is a cinematic upright FONAR MRI. Chiropractors are probably the best therapists to determine and treat skeletal obstructions and may be able to suggest tools less expensive than the FONAR MRI. Issue number 2 may be the easiest to treat through relaxation techniques (yoga) or simple blood/cerebrospinal fluid circulation therapies such as massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming. The injection by an MD of a mixture of dexamethasone/lidocaine/thiamine used to treat trigeminal neuralgia may be considered.

2. DE-TOXIFY

After a lifetime of eating badly, ingesting antibiotics and other toxic chemicals, exposure to heavy metals and nuclear fallout, toxins build up in the body and need to be flushed out in order to maximize the benefit of ideal, personalized foods and supplements. Check out DETOXIFY on the Internet to find your preferred protocol. One example:
want2bike (From Thisisms.com)suggested
“Dr. Hyman explains his 10 day detox diet.

I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not? (It takes 5 days to withdraw from a food allergy).

See also my Detoxification and Supplements post.

3. OPTIMAL ANTI-INFLAMMATORY NUTRITION.

See C-Reactive Protein – Key to MS Diet

Diet is critical to many diseases, particularly « auto-immune ». However, areas of vulnerability differ. For MSers it’s the vascular system linked to the central nervous system that matters. Diet impacts production of C-Reactive Protein (CRP) – which in turn impacts the endothelium of the vascular system. Secondly, proper diet acts to reduce cellular inflammation thereby preventing spasms in the veins’ smooth muscle layer. It follows that for MSers proper diet facilitates blood/cerebrospinal fluid circulation. For those without a serious veinous obstruction, diet/supplements alone may suffice to heal

4. SUPPLEMENTS

I have been taking a customized Standard Process Supplement Protocol (with additions) recommended by my Kinesiologist/Nutritionist since 1984 so I won’t suggest a general plan.
As to Diet, consider my post Paleo-Macro-biotic diet.

As a general protocol consult Matt Embry’s excellent
http://www.mshope.com. (food, supplements, exercise, CCSVI).


5. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

6. Homeopathic remedy Oscillococcinum by Boiron to head off a virus. IT WORKS (unless perhaps one is taking a toxic drug. Anti-biotics annul it for me.) Cost – 1 euro the dose, 1 or 2 doses will stop a sore throat, 6 doses maximum treatment over 3 days ($8).

7. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist may help.)
Be moderate in terms of your current condition. Don’t do so much that you throw yourself into an « attack ». (Early on I stressed myself with a « performance » mentality.) Now I walk a minimum number of steps per day and swim when I can.

Be creative. Tif of ThisisMS.com has recovered function with Neuromuscular electrical nerve stimulation in the Onyx Body S haping and Slim Spa which uses “Madame and Monsieur Electro-Slim Technology”. Hugo Macia (www.secretosdelaesclerosismultiple.blogspot.com.es.) is testing on himself a German made Neuromuscular “jacket” to regain function. See https://www.miha-bodytec.com/en/product/END OF QUOTE

Previously published on my site MSCureEnigmas.net https://www.mscureenigmas.net/

Best regards, Vesta

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