Hello to All and Question / Confirmation Regarding dx of MS

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Hello to All and Question / Confirmation Regarding dx of MS

Postby Greengood » Thu Apr 19, 2012 3:00 pm

I am new to the board and this is my first post. From what I've read (tremendous amount of information), I am really impressed with the level of knowledge and the board activity.

I am hoping someone could help fill me in on what I should expect to hear.

A little background, I am a 39 year old male. In November 2010 I had tingling in both of my feet and a numbness in my trunk. My primary care physician found I had low vit D levels. I started taking vit-D supplements and the tingling and numbness went away in February 2011 (about 2.5 months after the onset).

Fast forward to September 2011. I started getting tinnitus in both ears and I have it ever since. I also started getting pressure in the back of my head in December 2011. This happens on and off and not bad, but I wanted to get it checked out (coupled with the ear ringing, I was concerned it could be a tumor). My primary care physician sent me to a neurologist who ordered a brain MRI thinking it could be a brain tumor. The MRI had no signs of a tumor, but had over 20 very small T2 hyperintensities in a pattern that suggests demylination (pattern was in the left side). The hyperinsities did not take the contrast, or show as "active". My neurologist then suggested we get a total spine MRI and spinal tap to rule out / confirm MS. The spinal MRI showed a 7mm x 1mm hyperintensite on the left side of my C5 vertebrae and a herniated disc between my C6 and C7 vertebrae. Not other hyperintensities were found in my spine. I have not scheduled my spinal tap, but I had my eyes checked and I have no signs of nerve damage or vision loss. Additionally, I had blood work drawn to rule out Lupus, RA, AIDS/HIV, etc. All came back negative. (I am travelling for business and away from the MRI reports, so I am sorry for the lack of technical reference).

Having said that, based on having lesions on two of the three CNS, my neurologist said it was likely I had MS and I could be clinically diagnosed. However, he remains unsure since I have no "apparent symptoms" but he is prone to think my tingling from a year ago could have been an episode (my primary care physician thinks the vitamin D addressed the tingling and that it was not an episode). As such, he is pressing for the spinal tap. I have decided to get a second opinion before getting the spinal tap.

I am working on the assumption that I have MS, but without "confirmed" symptoms - past or present - I am not sure I should. Based on the information I am providing, should I come to the grips that this is MS? How likely is it that I have it?

Anyone have any advise or suggestions as I wait for my second opinion (scheduled for May 2)?

By the way, since this "diagnosis" I am feeling very nervous, feeling all sorts of "heat spots" on my skin with increased blood pressure. Amazing how the mind works.

Thank you for reading this and any advise is GREATLY appreciated.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby jimmylegs » Thu Apr 19, 2012 3:51 pm

hi there and welcome!

can i ask about your vit d regimen? were you taking d2, or d3? did you stop taking it in february, or continue? how much per day? had any tests since? are you supplementing anything else?

i ask because i have had side effects of taking vit d3 on its own without balancing my mineral intakes properly. if you're truly in vit d3 excess there's a risk of hypercalcemia and excess calcium could mess with other things in your system. even without hypercalcemia in the mix, there could be magnesium depletion in the picture.

re the tinnitus, if you search google scholar for studies on tinnitus and zinc you will find a lot of good reading. a serum zinc test might be informative for you.

given the herniated disc, if you're starting to see age-related degenerative disc disease, hydration and nutrition will be key. if i can track down this old site i used to enjoy re spine health, i'll be back to post the link.

hope that helps - sry about all the questions it just helps me figure out if the vit d3 might be part of the problem.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby Greengood » Thu Apr 19, 2012 3:59 pm

Thank you, Jimmy!

I take 2,000 IUs of vit-D3 daily. I still do (at the direction of my primary care physician). I am also taking b12 and krill oil.

As to the tinnitus, good stuff I will look into it. As you may imagine, it is rather annoying.

Frankly, I am much more concerned about MS - feel like I am walking on egg shells going back and forth thinking I have it and thinking I do not. I feel great, but the MRI's tell the story.

Take care and thank you!
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby jimmylegs » Thu Apr 19, 2012 4:50 pm

hi, and you're welcome!

ok b12 is a good choice - what form and dosage? omega 3s are super important too.

i'd suggest you investigate balancing your daily d3 intake with magnesium and zinc, at appropriate dosages and in appropriate forms, at the very least. calcium too if you find you need it.

based on studies of nutrient levels associated with lowest risk of ms and most closely approximating healthy controls, serum d3 should be up near 150nmol/L (normal range around 8-250), magnesium at least 0.90 mmol/L (normal range 0.70-1.10) and zinc up around 18 umol/L (normal range 11.5-18.5).

d3, magnesium and zinc are all known to be low in ms patients. as are b12, selenium, vitamin e, the b-complex, and a few other things such as poor O-6 to O-3 fatty acid ratio.

if you can get all these things tested, and be clear that the 'normal' range has a whole bunch of ms patients hanging out towards the bottom end, then you can work on getting your levels up into the healthy part of the normal range (as you can see above, it's variable depending what nutrient you're looking at)
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby shaight » Thu Apr 19, 2012 6:14 pm

green - my advice is to follow what jlegs suggests and to definitely get a second and even third opinion before the spinal. starting with eating whole foods and proper supplements is good for people with and without ms, so that is an easy one. as far as ms, the diagnose comes with time unfortunately. definitely get a lyme test also.

good luck.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby jimmylegs » Thu Apr 19, 2012 6:43 pm

ps re the spinal tap - if you have it done, follow instructions about lying down after. although you may want to lie down for longer. my neuro had me lie down after for 30 mins only and i personally needed way longer in order for the puncture to heal. in the end i had to sentence myself to a couple days of bed rest to recover from the postural post-LP headache.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby MarkLavelle » Thu Apr 19, 2012 9:07 pm

Greengood wrote:I have decided to get a second opinion before getting the spinal tap.
I'm all in favor of getting as many opinions as you can afford (as long as you feel capable of 'filtering' them), but I can't think of a single reason to insist on getting a second opinion before getting a spinal tap. There is no serious risk, and it may provide useful information.

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby shaight » Fri Apr 20, 2012 7:50 am

Mark -

i disagree with you based on three dr's from the boston area that i've dealt with. of course it was based on my specific situation, but they prefer not to subject patients to a spinal unless absolutely necessary. it certainly is not a fun procedure to go thru as JL stated her experience.
Though lumbar puncture is generally recognized as safe, it does carry some risks. These include:

Post-lumbar puncture headache. About 40 percent of people who have undergone a lumbar puncture develop a headache afterward due to a leak of fluid into nearby tissues. The headache typically starts several hours up to two days after the procedure and may be accompanied by nausea, vomiting and dizziness. Post-lumbar puncture headaches can last from a few hours to a week or more.
Back discomfort or pain. You may feel pain or tenderness in your lower back after the procedure. The pain might radiate down the back of your legs.
Bleeding. Bleeding may occur near the puncture site or, rarely, into the epidural space.
Brainstem herniation. Increased pressure within the skull (intracranial), due to a brain tumor or other space-occupying lesion, can lead to compression of the brainstem after a sample of cerebrospinal fluid is removed. A computerized tomography (CT) scan or MRI prior to a lumbar puncture can be obtained to determine if there is evidence of increased intracranial pressure. This complication is uncommon.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby Greengood » Fri Apr 20, 2012 9:13 am

Thank you all!

As you can tell, I am still learning about MS. By the sounds of it, if I do have MS, they may have caught it early and the disease modifying drugs could be very beneficial to prevent/limit relapses. I am not necessarily against BigPharma, but before putting these drug options in my body, I want to ensure I have MS and better understand the impact of nutritional balance and mental and physical health.

Is it possible to have MRI findings like mine and NOT have MS?

Take care!
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby shaight » Fri Apr 20, 2012 9:53 am

Lyme can look and act like MS apparently. Get that checked and make sure they do the Western Blot test.

http://www.aldf.com/faq.shtml
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby jimmylegs » Fri Apr 20, 2012 10:01 am

heya :) i had two spinal lesions consistent with b12 deficiency and 9 cranial lesions including the ominous 'dawson's fingers'

b12 deficiency is a major differential dx when assessing a potential ms patient. the neuro at the neuromuscular clinic and staff at the ms clinic didn't really listen to me about my b12 deficiency history. i own that i would not stop frantically supplementing b12 at the time so that they could get a clean read of my background levels! my family doc's computer program had a glitch which meant she did not confirm my b12 deficiency back story. i wasn't able to show her the result and point out the glitch til months later. my neuro told me that my cranial lesions were not consistent with b12 deficiency.

at the time i did not yet know about all my other deficiencies so i wasn't good at arguing about the potential causes of the cranial lesions. now i can hypothesize that zinc deficiency can also lead to brain lesions.

i remember when i was at my most cognitively impaired a couple years after dx, and just in the process of figuring out my zinc issues, that an MRI had shown a more active lesion in my brain. i described some of my then current cognitive symptoms to my neuro and asked if it was plausible that they were connected with the location in my brain of this more active lesion. he said yes.

at this stage i am aware of the dangers of imbalances with respect to copper and zinc. i searched for the following terms: serum zinc cranial lesions mri

and found this study (wilson's disease involves excess copper, which is generally going to mean too much copper in relation to zinc):

so it's only a case study, but telling that they took this patient with excess copper and brain lesions, provided him with zinc therapy (which would logically bring copper down and restore a balanced copper zinc ratio) and the brain lesions seen on MRI resolved.

Wilson's disease: resolution of MRI lesions following long-term oral zinc therapy
http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract
"A 28-year-old man with Wilson's disease developed neurological deterioration after a low-dose of d-penicillamine treatment for 2 weeks. He showed an akinetic rigid syndrome with generalized dystonia. Brain magnetic resonance images (MRI) on T2 and proton weighted images showed an increased signal intensity over the thalamus, basal ganglia and brainstem, especially the midbrain and pons. After treatment had been changed to zinc sulphate, the akinetic-rigid syndrome and dystonia were improved slowly in the following 4 years. Serial MRI studies showed a gradual resolution of the lesions. His current neurological status was almost normal except for dysarthria and mild intention tremor."

so, in my case i hypothesize that my constellation of brain and spine lesions were from not just b12 deficiency but also poor copper zinc balance, potentially among other things also, stemming from my chronic nutritionally imbalanced diet.

so there's one scenario where mri findings may not be related to ms. (didn't stop the docs from dx'ing me with it though. i just chose not to take the meds! lots of good whole food nutrition instead! :) )
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby Greengood » Thu May 03, 2012 1:39 pm

Hello All...I want to give you all a brief update. had my second opinion with a neurologist who specializes in MS. He, along with the head of the clinic and a neuro-radiologist, reviewed both my brain MRI and my spine MRI. Their findings were much different than the first reading. He told me the MRI scanner used was a Tesla 3, a very powerful machine that tends to pick up a lot of "noise" that some translate into lesions. He told me they feel there is at most two, suspicious looking lesions that could be from MS. Two. Down from 20. He told me the small spot on my spine is suspicious and could be MS related, but they are not sure.

He told me with no active or past symptoms (they are not certain the tingling in my toes and heel was an episode), he does not want to diagnose me with MS, but could call it CIS and start Avonex treatment or wait a year for another MRI to compare to the baseline MRI (March). Of course, he told me that if I have a defined episode to come right in and they'll get me started.

**

Right after the second opinion appointment, I visited a "radical" (by his own admission) naturopath. Based on his review of me (sans MRI) and my overall health, he does not feel I have MS. Also a chiropractor, he noticed my neck was very compressed and adjusted that to alleviate the pressure (two days later, no pressure). Interestingly, the naturopath feels autoimmune diseases such as MS are always being misdiagnosed (he said it really is an epidemic) and that I likely have certain viral infections that are attacking my body. Virus such as EBV, CMV, HSV-1, HSV-2, HHV-6 and Parvo Virus B19. He feels I should have a viral blood pull for these items to determine what I have. (I noted I have HSV-2, I get cold sores). He provided me a supplement list and schedule to suppress these viruses. He seemed to be "out there" a bit, but what he says makes sense to me. When I get a cold sore outbreak, it really "feels like my body is eating itself". Anyone have any experience with this?

**

So...am I making a mistake by not choosing to jump into the Avonex treatment? Since I really can't recall ANY clinical MS related symptoms and that I feel great (no fatigue, etc.) I am more inclined to wait it out a year and perhaps follow the direction of the naturopath.

Sorry about the long winded post, but any input is very welcome.

By the way, I hope the second opinion on the MRI helps someone who might be diagnosed.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby jimmylegs » Thu May 03, 2012 2:27 pm

i agree re misdiagnosis. it happened to me, i feel. as for testing for which viruses, personally i'd be like who cares about that? i want to know my levels of infection-fighting anti-viral and anti-bacterial nutrients, like zinc and selenium (which tend to be low in ms patients). they kick serious butt - i have never had a cold sore since i got onto this nutrition program.
i take no meds myself because i have spent the last 6 years rooting out all my nutritional probs and fixing them. as a result, i have no relapses. i am not the kind of person who would tell you you're making a mistake by avoiding avonex. i AM the kind of person that would always say, fix the hydration and nutrition first, see what problems you might still be dealing with after that, and THEN consider meds or other interventions.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby Greengood » Thu May 03, 2012 2:54 pm

jimmylegs wrote:i agree re misdiagnosis. it happened to me, i feel. as for testing for which viruses, personally i'd be like who cares about that? i want to know my levels of infection-fighting anti-viral and anti-bacterial nutrients, like zinc and selenium (which tend to be low in ms patients). they kick serious butt - i have never had a cold sore since i got onto this nutrition program.
i take no meds myself because i have spent the last 6 years rooting out all my nutritional probs and fixing them. as a result, i have no relapses. i am not the kind of person who would tell you you're making a mistake by avoiding avonex. i AM the kind of person that would always say, fix the hydration and nutrition first, see what problems you might still be dealing with after that, and THEN consider meds or other interventions.


I LOVE your outlook, jimmy. I've been following your posts in other threads and without question the amount of knowledge you bring to the table is not only tremendous, but very helpful.

FWIW, the supplements they are providing to me contain magnesium, calcium, bioflavonoids, among others. I am plan on working in zinc, selenium and calcium into my diet more than I ever have.
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Re: Hello to All and Question / Confirmation Regarding dx of

Postby jimmylegs » Thu May 03, 2012 3:09 pm

awesome! thanks g :)
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