CIS diagnosis Exploring options What helps you? Diet?

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CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Fri Nov 02, 2012 5:00 pm

Hi everyone,

First, thanks for all the information that has been put together on this board. It's been six weeks since my first MRI and you have helped me make sense of a very confusing set of circumstances. The suggestion of magnesium for muscle spasms has been worth it's weight in gold, allowed me to go back to work etc.

I have lots of lesions on my c-spine and just a few on the brain scan. I started bothering the doctors because of tingling and pain in my hands and feet three months ago, but recent symptoms have run the gamut from l'hermitte's sign to eye pain, uncontrollable blinking, dizzyness, and making wierd word substitutions when I talk. I also drop things. None of this was in my world a year ago, but looking back there is a history of periodic intense fatigue and random stumbling, ankle sprains etc.

I really hadn't had a clue about MS, now I'm convinced I have it. The neurologist is pushing disease modifying drugs. I never took anything stronger than aspirin and really don't like the side effects profile of the DMD's. I'm afraid of becoming disabled but I'm more afraid of losing what good years I have left to needles and side effects.

So my first question is what helps you? What mitigates symptoms, what works as rehab, how do you stay sane living with all of this?

Second, what is this 'anti-inflammatory' diet some of you refer to?

I have a husband, was going to have children. I'm well educated and work in law. I live in the San Francisco Bay Area and walk everywhere even though I'm now wobbly.

All comments appreciated.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Fri Nov 02, 2012 5:14 pm

hi and welcome :)

glad magnesium has been helpful to you - curious: did you increase dietary sources, reduce magnesium depleters, add a supplement, or all of the above?

to date i have managed to avoid DMDs. my approach has been purely diet revisions and an intense therapeutic-level supplement regimen. took me the last 5-6 years to get to a point where i can afford to be slightly lazy with the regimen without feeling immediate consequences.

as for anti-inflammatory diet. there is a concept out there called an IF rating for various foods. each food gets a score based on its 'inflammation factor'. developed by monica reinagel (sp?), the IF rating is accessible for many foods listed on www.nutritiondata.com. the idea is to have an overall anti-inflammatory diet. healthy people want a score for the day of +50 (i guess anti-inflammatory foods are 'good' therefore get 'positive' ratings). if a patient is dealing with inflammatory illness, the daily target is higher. of course you don't want to eat crap all day followed by one serving of powerfully anti-inflammatory food and expect to get away with it. it's just that some perfectly innocent looking whole foods, like berries or nuts, might be pro-inflammatory, while fish and dark leafy greens are the opposite. it's a bit of tracking and calculating to see where you're at, then adjusting as needed. i'll link you up to some of my old meal calculations.

there are a variety of nutritional knowns when it comes to ms. if you take action to address these, you can increase your odds of having healthy children one day. even if you already had young children now, there would be a lot of useful nutritional research to help protect yourself, and your kids as they got older.

if you have any other questions, feel free :)
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Fri Nov 02, 2012 5:22 pm

some links to anti-inflammatory meal calculations

regimens-f22/topic2489-210.html#p155699 (mar 2011)

regimens-f22/topic2489-255.html#p170052 (jul 2011)

regimens-f22/topic2489-255.html#p170263 (jul 2011)

sample single food entry on nutritiondata.com (sweet potato, baked, 1c serving - see IF factor, 378 strongly anti-inflammatory..)

http://nutritiondata.self.com/facts/veg ... cts/2667/2
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Fri Nov 02, 2012 11:12 pm

Hi Jimmylegs,

Thanks for responding. So far supplements plus upping the fish intake.

Going to start exercise other than walking. Yoga, tai chi for balance, very afraid that I have left it too late. I hadn't a clue that there was any problem.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Sat Nov 03, 2012 2:35 pm

sounds good! don't worry about leaving it too late. just do what you can and be cheerful about gains. sometimes patience is needed :) i have been fortunate to enjoy lots of improvement since i changed my diet and lifestyle. yes i have permanent damage, or what seems like it must be permanent damage 6 years in, but i am SOOO much better than i was 6 yrs ago. it's night and day :D if you can get some bloodwork done, that's very useful info to have.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Sat Nov 03, 2012 6:00 pm

Returning to primary doc for the first time post neurological referral soon. I will ask for monitoring on the vitamins etc I am taking.
B12 was low normal and I'm supplementing daily. D was at 12 where the normal range starts at 22 and goes up. :sad: Again I am supplementing daily. Those are the only hard numbers I have.

Otherwise, wondering how much what works for strokes works for us? Brain plasticity is a wonderful concept but how do you apply it? I really need to get my speech back up to speed professionally. Is dealing with MS like dealing with an intermittent series of mini strokes?

I suppose the surprise and shock of falling sick as an able adult is part of the typical profile. Still fighting the realization that this is me.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Sat Nov 03, 2012 7:15 pm

you might want to consider asking for a serum zinc test - low zinc impairs absorption of both b12 and d3.

the nutrients that work for ms can be applied to many different scenarios. i haven't looked into stroke but i can hypothesize that the integrity of the blood vessels would have links to zinc, and that other nutrients linked to blood viscosity would be implicated also. probably similar to those that are problematic in ms. nutritional issues can manifest themselves in highly variable ways from individual to individual.

i'm afraid i don't have speech issues in my personal experience but perhaps others can comment.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby NHE » Sat Nov 03, 2012 11:12 pm

CaliReader wrote:Otherwise, wondering how much what works for strokes works for us? Brain plasticity is a wonderful concept but how do you apply it? I really need to get my speech back up to speed professionally.


Regarding brain plasticity, you might want to read the book "The Brain That Changes Itself" by Dr. Norman Doidge.

Regarding speech problems, I haven't dealt with that either, but have you considered a speech or occupational therapist?


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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Sun Nov 04, 2012 6:19 pm

Thank you NHE.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Mon Nov 12, 2012 6:19 am

i finally just tried looking up the zinc/stroke connection. OMG!!! 65????? that's 9.9 umol/L. outright deficient. barely half of optimal levels.

Clinical Significance of Serum Zinc Levels in Cerebral Ischemia
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3042622/
"Background. Zinc mediates several vital physiological, enzymatic and cellular functions. The association between serum zinc and stroke outcome has not been previously evaluated. Methods. This single center retrospective study was conducted on consecutive stroke (n = 158) and TIA (n = 74) patients. We sought to determine whether serum zinc concentrations in patients with acute ischemic strokes were associated with stroke severity and poor functional status at discharge, respectively. Results. Overall, out of the 224 patients analyzed (mean age 67 years), 35.7% patients had low zinc levels (65mcg/dL). Patients with stroke (n = 152) were more likely to have low zinc levels (OR = 2.62, CI 1.92–3.57, P < .003) compared to patients with TIA (n = 72). For patients with stroke (n = 152), multivariate analysis showed that low serum zinc levels (OR 2.82, CI 1.35–5.91, P = .035) and strokes with admission severe strokes (NIHSS > 8) (OR 2.68, CI 1.1–6.5, P = .03) were independently associated with poor functional status (MRS > 3) at discharge from the hospital. Conclusion. Low serum zinc concentrations are associated with more severe strokes on admission and poor functional status at discharge."

Depletion of serum zinc in ischemic stroke patients
http://www.ncbi.nlm.nih.gov/pubmed/20852753
"The concentration of zinc was significantly lower in stroke patients (P = 0.001) as compared to normal subjects ...Zinc may represent an independent risk factor for stroke and therefore a possible target for prevention."
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Wed Nov 14, 2012 11:43 am

Just thought I'd post an update.

Met with the neuro for follow up. He scratched the underside of my feet in a way that should have hurt but didn't. The pins hurt on the left side, but not much on the right. I did pass the balance test and heel to toe walking. I still have pins and needles, numbness in my face, hands and feet. The pain in my optic nerve and double vision have gone and I am finding it much easier to breathe, swallow and find the right words when I speak.

2nd MRI showed lesions in the frontal lobes, more right than left. A couple small spots in the cervical spine and a 9 mm vertical line at T4 that looked to be 20% of the width of the cord.

When he offered treatment, I told the doc that I had researched the 4 usual drugs and I didn't think they were for me.
He got grim for a minute. Said they had more effective drugs, that were also a lot more dangerous, but he didn't argue.

He also said that the MRI results were not typical of MS but that he had ruled out the other possible diagnoses. Left me with clinically isolated syndrome diagnosis and an order for an MRI in six months. Because of the speech issues, I also got an order for neurocognitive testing when an appointment comes free, which could be a year.

If I step outside my insurance, I could look for a second opinion at an MS clinic nearby. Not sure it's worth it. I'm ready to take a deep breath and move on, but the pain and sensations never go away.

I'm seriously considering worm treatment. In addition to the supplements I mentioned above, I've added baby aspirin, lipoic acid, acetyl L-carnitine, massive amounts of green tea and a fruit and berry smoothie every day. I've cut sugar and dairy. I'm weighing how best to approach increasing exercise without getting overheated. Sadly, my symptoms get worse with heat. It's one of the reasons I think I have MS.

It's an emotional roller coaster. Today, I'm calm. Hoping I can stay healthy and facing the very real risk that I can't.

Thanks again.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Wed Nov 14, 2012 3:03 pm

were you able to get a serum zinc test done, or follow up on the b12 or d3? again, since you are having issues with both, and absorption of both is impaired when zinc is low, it could be a very worthwhile thing to investigate.

other than that - would you be up for providing a detailed list of your daily supplement intakes? i can comment on forms, dosage, timing if you are interested in fine tuning the nutrition side of things.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Wed Nov 14, 2012 3:22 pm

Thanks, Jimmylegs.

I appreciate it.

I'm taking approx 6000 IU of D3 daily. I'm taking a B1 complex and large amounts of B12. I'm taking 500 mgs Magnesium every night and 500 mgs of Calcium every other morning. The zinc supplement I could find was for 100 mg, so I'm taking it once per week. Also added a fish oil tablet.

I haven't gotten back to talk to the primary care doc since diagnosis and right now, I'm just tired. I want to do what I can and not see another doctor for awhile. I realize this is not as precise as what you usually do. Our diet was already high in vegetables. Now it is also high in fruits, nuts and fish. The next step is exercise and cutting stress, possibly adding a dog to the household.

All advice is welcome.
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby jimmylegs » Wed Nov 14, 2012 4:54 pm

thanks for these details :).

can you specify what form of magnesium? curious re potential (or lack thereof) for absorption.

good idea to space out the calcium, and great idea to add the fish oil.

as for the zinc, could be a good idea to bump up to every other day in the morning (on the in between days, when you don't take calcium). when my zinc was originally tested my doc said take 100mg zinc daily for a month and then retest.

does your zinc product have copper in it for proper cu/zn balancing? if not, please consider adding 2mg copper daily any time you use therapeutic amounts of zinc (ie equivalent to 50mg per day).

maybe when you feel better there will be a chance to do some more investigations re your serum levels. GREAT idea re exercise and stress reduction! :D
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: CIS diagnosis Exploring options What helps you? Diet?

Postby CaliReader » Fri Jan 18, 2013 6:02 pm

So, it's been a couple months. It feels like more.

I knew nothing about neurological symptoms before diagnosis. Didn't know. Didn't have a reason to think I wanted to. Had I known, I might have bothered about a doctor about intractable hiccups, or wierd laughter, or numbness, or... a few years earlier. Since my first MRI I spent months obsessively researching MS. That has slowed down a bit now I've returned to work.

I didn't want to take meds, but I'm now seriously considering Avonex, pending good news re BG12. There are definitely research articles that show that interferons don't do much to slow disease progression. Against this, there is Prof. Goodin's article on mortality rates in the original members of the Betaseron study. Apparently, a statistically significant subset of the untreated group died younger from MS than those who were treated. Depressing.

Of course none of this information reflects the fact that the lifestyle choices were made more than 20 years ago. Prof Goodin's study doesn't seem to account for who smoked. It also doesn't reflect diet or vitamin D or other factors we now know to be important.

Currently, my initial relapse has much improved, but I'm living with heat sensitivity, fatigue, balance issues when I stop walking or turn corners or rise from a chair. I have an intermittent tremor in my right arm and what seems to be muscular weakness on the far right side of my right leg. It could be much worse.

I'm exercising. I'm taking every day B12, B1 Complex, Fish Oil, Melatonin (at night) Magnesium (at night) Zinc, Calcium, CoQ10, Vit D 6000 IU, Multivatimin, Inosine, low dose aspirin. Antioxidants seem the most promising, readily available, avenue of attack. If I can't get this disease cured, I can at least promote long term health.

I've given up dairy, cut refined sugar except for very dark chocolate, sharply reduced wheat intake and am eating lots of fish, fruits, nuts, berries, sweet potatoes, squash and brightly colored vegetables. I won't give up meat, but I'm building my diet from the attempt to take in as many different nutrients per day as possible.

I may well take helminths (worms) when my budget allows. I'm looking for a reputable source for estriol. I'm intrigued by the HPA axis dysregulation issue in MS but haven't found a way to treat it yet. I've done my best to improve sleep and cut stress, but I'm a lawyer.

This board and Pub Med and especially Pub Med Central have been the best sources of information available. Thank you.

Re CCSVI, I don't know what to think, except that I'm nowhere near ready to contemplate surgery of any kind. I've had bad reactions to anesthesia in the past. I don't know what causes MS. I just know I have something that matches that clinical picture and I don't want it to get worse.

So. I'll be around when I can. This is a good group.
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