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What a long two years it has been on this journey of what is wrong with me! It all started July 20, 2014, with the most incredible and intense pain in my right eye. Since that day, it has been one new symptom after another... hand/arm tingling & numbness, unexplainable clumsiness, weakness in my legs, waves of extreme fatigue and daily dizziness and head pressure. The first set of MRI's showed one lesion (in a location typically seen with migraine suffers). Blood and CSF testing showed some elevation in the CSF IgG and CSF high in protein levels. Even with the first lesion and some positive markers in the testing, I was told that it still didn't mean I had MS.

After a recent Second set of MRI's showing a new lesion in my corpus callosum, my neurologist added to my chart demyelination of the Central Nervous System... She still did not come right out and say if I had MS or not...

I am at a loss, frustrated , fighting daily to keep my life together and moving forward, and sincerely just wanting to have some answers finally. Everything I see on demyelination of the CNS leads to MS... has anyone else had the diagnoses of demyelination of the CNS before being told finally they have MS?

Thank you in advance for your response & feed back!

MonkaR wrote:What a long two years it has been on this journey of what is wrong with me! It all started July 20, 2014, with the most incredible and intense pain in my right eye. Since that day, it has been one new symptom after another... hand/arm tingling & numbness, unexplainable clumsiness, weakness in my legs, waves of extreme fatigue and daily dizziness and head pressure. The first set of MRI's showed one lesion (in a location typically seen with migraine suffers). Blood and CSF testing showed some elevation in the CSF IgG and CSF high in protein levels. Even with the first lesion and some positive markers in the testing, I was told that it still didn't mean I had MS.

After a recent Second set of MRI's showing a new lesion in my corpus callosum, my neurologist added to my chart demyelination of the Central Nervous System... She still did not come right out and say if I had MS or not...

I am at a loss, frustrated , fighting daily to keep my life together and moving forward, and sincerely just wanting to have some answers finally. Everything I see on demyelination of the CNS leads to MS... has anyone else had the diagnoses of demyelination of the CNS before being told finally they have MS?

Thank you in advance for your response & feed back!

Welcome to ThisIsMS, MonkaR.

Your symptoms are found in many conditions, which must be tested for and ruled out first before the MS diagnosis can even be considered. (Even demyelinating lesions are found in conditions other than MS.)

I am curious to know if, in your blood testing, a vitamin D test (the 25-hydroxy D test) was done. Vitamin D deficiency is one condition that can be involved in your kind of symptoms. It is estimated that over 1/2 of the world's population is deficient in vitamin D.

Vitamin B12 deficiency can also manifest your symptoms – I hope you have had this testing too. Any person at any age can develop B12 deficiency.

If you have the actual number results (I believe the patient should request a copy of every test result – it is important to have the actual numbers.), I hope you will share them with us.

Hi lyndacarol,

Yes, I did have my Vitamin B12 & D levels checked as well. B12 was recorded at 301 ng/L (Standard range 211- 911 ng/L). D was recorded at 24 ng/mL (standard range 20-50 ng/mL). Even though my levels are within the standard range, I have added supplemental B12 and D vitamins to my daily multi-vitamin intake.

MonkaR wrote:Yes, I did have my Vitamin B12 & D levels checked as well. B12 was recorded at 301 ng/L (Standard range 211- 911 ng/L). D was recorded at 24 ng/mL (standard range 20-50 ng/mL). Even though my levels are within the standard range, I have added supplemental B12 and D vitamins to my daily multi-vitamin intake.

Your B12 & D levels are low – considered frankly deficient by some people. Lab reference ranges, especially for B12, are established locally with the mean value of all the people having the test (and adding 2 standard deviations).

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:

There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.

The lab reference ranges in the US are generally considered to be set too low. In Japan, any B12 result below 500 is considered deficient and treated as such.

Your B12 result (at 301 ng/mL) falls in the gray zone described by Pacholok and Stuart. B12 injections given in the offices of US doctors are in the form of cyanocobalamin, which must be decyanated first before the body can use it. Supplementation in the form of methylcobalamin or hydroxocobalamin is preferable because they are more bioavailable. (Oral sublingual tablets are readily absorbed by some people, not all people.)

Your serum D level (at 24 ng/mL) is below the 40-60 ng/mL range recommended by the California-based GrassrootsHealth. (I urge you to review their website at http://www.GrassrootsHealth.net) There are some experts promoting recommendations for people with neurological symptoms to reach and maintain levels of 80-100 ng/mL.

A deficiency of either vitamin B12 or vitamin D can lead to neurological symptoms. Be aware that there are individual dose-related responses: the same dose of D3 supplement will not achieve the same degree of increase in each person's blood level – each person's response varies. Vitamin D tests are necessary every 3-6 months to monitor the efficiency of absorption.

MonkaR wrote:I was told that it still didn't mean I had MS.

After a recent Second set of MRI's showing a new lesion in my corpus callosum, my neurologist added to my chart demyelination of the Central Nervous System... She still did not come right out and say if I had MS or not...

I am at a loss, frustrated , fighting daily to keep my life together and moving forward, and sincerely just wanting to have some answers finally. Everything I see on demyelination of the CNS leads to MS... has anyone else had the diagnoses of demyelination of the CNS before being told finally they have MS?

The most widely accepted / quoted criteria for an MS Diagnosis is the McDonald criteria: https://en.wikipedia.org/wiki/McDonald_criteria

Look at the criteria and discuss with your neuro how you do or do not fit one of the categories. But I think as has been pointed out above, its basically used after all other differential diagnosis have been ruled out; and that's where it can become a question of how long is a piece of string...