This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,
I am currently NOT diagnosed with MS and want to make that clear and also want to apologize if this is considered an intrusion of your forum. I'm looking for advice from somebody that may have experinced what I am currently going through.

I am currently experiencing my second case of optic neuritis. First case was left eye in 2008 and settled down on it's own. This current case is now in my right eye and is more severe than first case in my left. This case developed in Augsust of this year. I had seen two optoneurologists in Boston for the first case in 2008 and left them both stumped. Now I've been back twice to the optoneurologist in the past 2 months and left him baffled. Only test that he ran was a brain MRI which came back clean and he indicated he was looking for brain lesions. As of late I've been experiencing facial numbness on left side and continue to have the swelling of the optic nerve. All my doctor keeps doing is looking in my eye and taking pictures of my eye and telling me he is stumped. He seems unconcerned with my facial numbness and has not suggested any additional testing. My family doctor run numerous blood tests and lyme test and all have come back fine. In addition I have always experienced back pain that I've received chiropractic care for and am experiencing fatigue.

I found it odd that my doctor hasn't ordered a scan on my spine or performed a lumbar puncture. It appears any suspicion from what I've read warrants these tests.

My optoneurologist admitted he is frustrated and baffled but left it that I come see him in another 4 weeks. He admitted something is causing the inflammation but hasn't performed any additional tests.

Should I try to see a regular neurologist at this point. Thoughts? Suggestions?

Thanks

optic neuritis is correlated with a low zinc level. ms patients also tend to have low zinc. the low zinc level may not be directly causing the optic neuritis, but zinc does about 100 jobs in the body and you need to have good levels to make sure those jobs are all being done well, including the ones that involve the eye. for example without zinc your body can't utilize vitamin A (retinol) properly and that has a direct impact on eye health.

if you can request a zinc test, make sure your serum level is as close as possible to 18.2 umol/L. the normal range is far wider (11.5-18.5 in the literature, sometimes as wide as 10-20 in the lab). ms patients hang out in the low end of the 'normal' range, while the healthies hang out in a tight average very close to 18.2. the takeaway point being don't get it tested and let them tell you it's 'normal'. that just means stats normal, ie you're somewhere under the bell curve. to ensure optimal zinc status you need to be at the einstein end of the curve, not the gump end!

fyi gluten consumption affects your zinc status. if you take a break from or reduce intake of gluten your body will have an easier time holding on to zinc.

info on healthy zinc-rich foods:
http://whfoods.org/genpage.php?tname=nutrient&dbid=115

and a little science:

Zinc in the eye
http://www.sciencedirect.com/science/ar ... 5782901953
Zinc has long been recognized as an essential constituent of various tissues. Many clinical conditions and dietary factors reduce the absorption or the biological availability of zinc, and lead to zinc deficiency which produces structural and functional alterations in many organ systems. The highest concentration of this trace element in the human body is measured in the eye, particularly in the pigment-containing components. The deficiency of zinc has a dramatic effect on ocular development especially when it occurs during early prenatal period. Zinc is required for the structure and activity of many ocular metalloenzymes. Although the exact mechanism of its molecular and cellular functions are largely unknown the essentiality of this element in the components of the eye, including the retina, choroid, cornea and lens, is well established; it is also well known that zinc deficiency causes functional impairments in various parts of the eye.

Zinc and the Special Senses
http://www.annals.org/content/99/2/227.short
"There is evidence that zinc is important for maintenance of the special senses: vision, taste, and smell. Rod function is impaired in zinc deficiency due partly to its role in vitamin A metabolism. However, optic nerve function may also be affected by zinc status. Microophthalmia, anophthalmia, and optic nerve abnormalities have all been found in the offspring of female rats fed zinc-deficient diets."
"...many drugs that chelate zinc show are toxic to the optic nerve..."

hope that helps!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

oh and as for the back pain and fatigue, test serum magnesium and ensure levels are at least 0.90 mmol/L. just for the pain, test vit d3 and ensure levels are at least 150nmol/L.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Other things which show similiar sympthoms of MS are Lyme disease and mercury poisoning. If you have a lot of dental work that could be the problem. Amalgam fillings and root canals can result in illness. I had experience double vision and dizziness until I had my bad teeth removed and did a detoxification program. Something you might want to consider.

http://www.videosurf.com/video/amalgam- ... 1-66846751

http://www.melisa.org/pdf/Mercury-and-autoimmunity.pdf

http://www.whale.to/d/meinig.html

what kind of chiropractic care? conventional or upper cervical chiropractics?

Conventional care. Most of my problems are upper back/neck-thanks

Vman74052,

My guess is that it would be worth seeing a neurologist for another opinion, if the neuropts have nothing else to offer. Clearly, something serious is going on.

Do you know if, in the blood tests they ran, they checked for NMO (Devic's disease)?

Other than a lyme, syphillus and lupus tests, all the other blood testing was standard testing for blood cell counts, glucose, etc.
I have not been tested for NMO. I have not had any spine MRI's or any lumbar punctures. - Thanks

Not saying that's what you have, but given your episodes of optic neuritis, and the lack of brain lesions, my guess is that it should probably be ruled out. I'm surprised the neuroopth wouldn't consider this. You've probably already googled NMO, but, if not, here's a few links:

http://www.myelitis.org/nmo.htm
http://www.mayoclinic.org/medicalprofs/ ... ptica.html
http://www.ninds.nih.gov/disorders/neur ... optica.htm

NMO is mainly characterized by optic neuritis, and lesions of the spinal cord,without brain lesions (this wouldn't explain the facial numbness, though). There is also a blood test that looks for IgG antibodies, but I don't remember how sensitive and specific it is, i.e if it can definitely rule NMO in or out. Also, I don't know how widely used this blood test is.

Again, this is all just speculation....

vman was there a zinc test in the mix? if not, that might be a good thing to ask for, per the above.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Patientx,

your speculation is appreciated. My optoneuro admits something is underlying but for whatever reason fails to rule things out. I am starting from square one and plan to be more proactive in demanding some answers. I've read up on Devics before and based on what I just read about it again I can't believe at a minimum that a spinal mri or blood test has not been run. Thanks again. I also plan to ask about zinc deficiency.

good to be proactive and insistent vman. the docs do not live with the patients' problems 24/7 like we do careful also re zinc 'deficiency' - remember it can be 'normal' and you'll be told that's good enough, you're not 'deficient'. when in fact you want to aim for that sweet 'healthy control' zone of the normal range. recently there was a patient who asked for a zinc test and was told it was 'normal', fine. she pressed for the numbers and it turned out the lab was using the range 10-20 umol/L and her result was 10.083. they didn't even warn her how close she was to the brink. patients really do need to be their own advocates.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Great point. Glad you reminded me. This has been a frustrating few months. It there was no physical proof in my eye I would feel like I'm loosing my mind and probably given up at this point. I will surely let all know how things pan out. Thanks all for the insight/suggestions.

yvw. a plain old serum zinc test should give you a great starting point to go forward from. one time i recommended a zinc test to a TIMS member and at first the result came back 17.9. i was surprised bc that is pretty good - but then it turned out the lab had made and error and the level was more like 13.5 or something, so there was actually lots of room for improvement.

i mentioned above that gluten intake lowers zinc status, but i forgot to say that high levels of phytates can also impair zinc status. fyi.

good luck!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com