This Is MS Multiple Sclerosis Knowledge & Support Community

***crossposted***

Hey there everyone, thanks for reading. I'm a 28 year old female; I've been followed by a neurologist for almost 4 years now. I have NOT been officially diagnosed with MS, but I have had textbook symptoms and family history.
3 years ago I developed optic neuritis in one eye (likely postpartum, my first child was 8 weeks old) -- this is the ONLY diagnosable MS symptom I have had in almost 4 years (June 2013). Since this event I've had only two "episodes" of numbness/burning in both hands, and a heaviness of one leg. Both of these symptoms resolved on their own within 3-4 days and haven't returned. I've had 8 MRIs of my brain and 3 of my c-spine, all negative, with the exception of one "nonspecific" lesion of brain white matter. I have had a negative lumbar puncture. I also suffer from chronic migraines, which can also cause lesions on the brain. My neurologist always pressures me to begin drug therapy because "the sooner you begin, the better" but I'm afraid to take that on without any clinical evidence that the MS diagnosis is correct. In the doc's own words, "once you get on the MS train you can't get off." Meaning that for the next 40-60 years of my life, if I'm lucky, I'll be injecting or taking pills for a disease I may not have. By the doctors own admission, if I do have MS it may be so mild a case MRI scans aren't detecting it, and the "window is already closed" for early intervention by drug therapy (since I have had no symptoms that require medical treatment in almost 4 years)

Sorry that was long.....am I being stubborn or in denial by delaying treatment? I need concrete proof of such a serious diagnosis and so far, though I accept that it's a possibility in my future, I'm not buying it for now. I'd like to save myself a few years of drug treatments and their side ffects if at all possible. Any and all feedback is greatly appreciated. Stay well, everyone

Andrea5501 wrote:I'm a 28 year old female; I've been followed by a neurologist for almost 4 years now. I have NOT been officially diagnosed with MS, but I have had textbook symptoms and family history.
3 years ago I developed optic neuritis in one eye (likely postpartum, my first child was 8 weeks old) -- this is the ONLY diagnosable MS symptom I have had in almost 4 years (June 2013). Since this event I've had only two "episodes" of numbness/burning in both hands, and a heaviness of one leg. Both of these symptoms resolved on their own within 3-4 days and haven't returned. I've had 8 MRIs of my brain and 3 of my c-spine, all negative, with the exception of one "nonspecific" lesion of brain white matter. I have had a negative lumbar puncture. I also suffer from chronic migraines, which can also cause lesions on the brain. My neurologist always pressures me to begin drug therapy because "the sooner you begin, the better" but I'm afraid to take that on without any clinical evidence that the MS diagnosis is correct. In the doc's own words, "once you get on the MS train you can't get off." Meaning that for the next 40-60 years of my life, if I'm lucky, I'll be injecting or taking pills for a disease I may not have. By the doctors own admission, if I do have MS it may be so mild a case MRI scans aren't detecting it, and the "window is already closed" for early intervention by drug therapy (since I have had no symptoms that require medical treatment in almost 4 years)

Sorry that was long.....am I being stubborn or in denial by delaying treatment? I need concrete proof of such a serious diagnosis and so far, though I accept that it's a possibility in my future, I'm not buying it for now. I'd like to save myself a few years of drug treatments and their side ffects if at all possible. Any and all feedback is greatly appreciated. Stay well, everyone

Welcome to ThisIsMS, Andrea 5501.

Factors associated with recovery from acute optic neuritis in patients with multiple sclerosis. (2014)
Malik MT, Healy BC, Benson LA, et al.
http://www.ncbi.nlm.nih.gov/pubmed/24850491

CONCLUSION:
Vitamin D levels affect AON severity, whereas younger age, attack severity, and male sex affect AON recovery. Underlying mechanisms and potential therapeutic targets may identify new measures to mitigate disability accrual in MS.


Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818

Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.


In view of the above two articles, I urge you to call your GP and request the vitamin D blood test called "25-Hydroxy D." The California-based group, GrassrootsHealth (http://www.grassrootshealth.net) recommends that a person's vitamin D level be at least 40-60 ng/mL. Vitamin D experts and some neurologists recommend a level between 80-100 ng/mL for people with neurological symptoms.

The only way to know whether you are deficient in vitamin D is with a test! Once you know the actual test result number (Ask for your own copy of the test result!), then you can proceed with an action plan.

In my opinion, you are completely reasonable to refuse treatment until you have a definite diagnosis. MS drugs have serious side effects and should not be taken casually.

In the doc's own words, "once you get on the MS train you can't get off." I absolutely disagree with your doctor – I used FDA-approved injectable MS disease modifying drugs (DMD's) for 10 years; and then, I stopped (I got OFF the train) because I felt they were useless in my case and the side effects were too great.

Andrea5501 wrote:...am I being stubborn or in denial by delaying treatment?

No. I would not accept an MS diagnosis without certainty. I think what your doctor meant by "once you get on the MS train you can't get off" is that once you get classified as an MS patient, every symptom you have will likely be viewed by your medical providers as a symptom related to MS. This is dangerous because MS affects the CNS and can produce a wide variety of symptoms. Your true condition, whatever it may be, might never be correctly diagnosed once your doctors put on their MS tinted glasses.

By the way, what type of diet do you follow, e.g., omnivore, vegetarian, etc.? Have you ever had your vitamin B12 levels tested? If so, do you know the results, i.e., usually in pg/mL?

Thank you both -- I've had very few lab tests; negative for Lyme, negative for neuromyelitis optica and celiac disease, and all other values within range. Does not look like Vitamin D or B were included. I don't follow any strict diet, so I'm an omnivore. Also forgot to mention, as my Neuro didn't see any connection, I had a total thyroidectomy in August (2016) due to a cancerous nodule. ON and other sensory symptoms occurred years before this. However, my endocrinologist has said that according to thyroid labs he ordered, I was slowly developing hypothyroidism; symptoms of which include Fatigue, Increased sensitivity to cold, Constipation, Dry skin, Muscle weakness, Muscle aches, tenderness and stiffness, Pain, stiffness or swelling in your joints, Impaired memory.....and I edited that list to just include the symptoms that also match MS. I'm connecting the dots but neuro, endo and ENT have all said that one has nothing to do with the other.

Andrea5501 wrote:Does not look like Vitamin D or B were included.

Low levels of vitamin B12 can cause a plethora of neurological symptoms. You may wish to read the following topic for more information.

http://www.thisisms.com/forum/natural-a ... 24857.html

Do you take any supplements? If so, which ones?

Andrea5501 wrote:I've had very few lab tests; negative for Lyme, negative for neuromyelitis optica and celiac disease, and all other values within range. Does not look like Vitamin D or B were included. I don't follow any strict diet, so I'm an omnivore. Also forgot to mention, as my Neuro didn't see any connection, I had a total thyroidectomy in August (2016) due to a cancerous nodule. ON and other sensory symptoms occurred years before this. However, my endocrinologist has said that according to thyroid labs he ordered, I was slowly developing hypothyroidism; symptoms of which include Fatigue, Increased sensitivity to cold, Constipation, Dry skin, Muscle weakness, Muscle aches, tenderness and stiffness, Pain, stiffness or swelling in your joints, Impaired memory.....and I edited that list to just include the symptoms that also match MS. I'm connecting the dots but neuro, endo and ENT have all said that one has nothing to do with the other.

Information can be gleaned from almost every source, IMO.
Symptoms of Vitamin D3 Deficiency (7 min. video)


Curtain #1: Skin Dry skin is the most common symptom of vitamin D3 deficiency. It is mostly caused due to the lack of antioxidants.
Curtain #2: Skin Vitamin D3 plays an important role in preventing premature aging. It makes your skin supple. Vitamin D3 creams are often prescribed to treat skin problems like psoriasis and ae.
Curtain #3: Thyroid Gland Vitamin D3 is crucial for the proper functioning of the thyroid gland. So, vitamin D3 deficiency symptoms are also related to the function of the thyroid gland.
Curtain #4: Thyroid Gland The presence of vitamin D3 in the cell is vital for the thyroid hormone to affect the cell. Even the treatments for thyroid using herbs, progesterone or raising T3 levels requires the right amount of vitamin D3 to be effective.
Curtain #5 Neurological Symptoms Men and women usually suffer from neurologic symptoms of vitamin D3 deficiency. Vitamin D3 helps control relaxation of skeletal and involuntary muscles. Deficiency symptoms include cramping and constriction of blood vessels.
Curtain #6: Neurological Symptoms This results in an increase in blood pressure, thus increasing the likelihood of migraines and headaches.
Curtain #7: Neurological Symptoms The presence of vitamin D3 in the cell is vital for the thyroid hormone to affect the cell. Even the treatments for thyroid using herbs, progesterone or raising T3 levels requires the right amount of vitamin D3 to be effective.

Serum 25-Hydroxyvitamin D Concentrations ≥40 ng/ml are Associated with >65% Lower Cancer Risk: Pooled Analysis of Randomized Trial and Prospective Cohort Study (2016)
Sharon L McDonnell, Carole Baggerly, Christine B French, et al.
http://journals.plos.org/plosone/articl ... ne.0152441

GrassrootsHealth found an inverse association between vitamin D serum levels and all non-skin cancer. Using statistical analysis, they found that women with vitamin D serum levels ≥40 ng/ml had a 67% lower risk of cancer than women with serum levels <20 ng/ml. The greatest decrease in risk occurred between ~10 - 40 ng/ml. Calcium did not have any significant effect on cancer risk in this analysis.

Conclusions: 25(OH)D concentrations ≥40 ng/ml were associated with substantial reduction in risk of all invasive cancers combined.


I strongly suggest that you request the "25-Hydroxy D" blood test from your GP (or neuro, endo, or ENT). Your symptoms (ALL) could be the result of vitamin D deficiency – you are justified in requesting the vitamin D test.

If your doctors will not cooperate in ordering the test, it is possible to order a 1-time vitamin D test kit from GrassrootsHealth for a $65 fee (+ $5 shipping). This at-home test requires pricking a finger, placing a few drops of blood on the blood spot card, and mailing it in (you get results within a week).
https://www.grassrootshealth.net/proj-welcome/?pr=95284

How to Complete Your Home Vitamin D Blood Spot Test (5 min.)
VitaminDaction Project by GrassrootsHealth