Don't know anymore

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Don't know anymore

Postby MnRdunck » Sat Oct 14, 2017 3:59 pm

I was told by a Neurologist who specialty is MS, that I had been seeing for my back, that he thought that I had MS. I had been told numerous times by him that I was having an attack, he even had me come back in a second day in a row saying that a attack lasted now more then 24 hours. He ordered a brain MRI which came back as positive as MS. Then he ordered a spinal tap, evoked potentials, and blood work. Everything after the MRI was normal. I would probably been a little more accepting of this but it was hard to believe and when I looked the Dr up with all his praises there were a few who claimed false diagnosis's. So I went to another Neurologist who told me that the lesions that I have are from my migraines, and that my utter lack of being able to walk heel to toe was caused by my lower back. Which is what I went with. Now a year later my chronic pain is worse and I just had something happen to me on Wednesday. It had slowly lead up to this that that day my pain had finally reached a point where there was absolutely nothing else in the world worse than it. I no longer wanted to live. Then Friday morning I wake up and I am completely back to the way I had felt a week before this happened. Just bam back to my normal amount of pain. I called the first Dr. he agreed to see me again on the 1st of next month. I told him what had happened and he said that that was definitely an attack. Saying that 50% of MS have chronic pain. So I can see him on the 1st or wait until January 2018 when another Dr has an opening.

Also besides my horrible ataxia, I have had my memory get worse recently, my vision is worse now I actually have to wear my glasses. I have had it wear I shake badly for a number of years (some people think I have Parkisons) plus I get these jerks in places like my arms, legs or head. I have horrible nerve pain and someone suggested that my neurotin could be to blame but, I have not always been on it and when I do not take it there is such unbelievable pain. It actually makes it so my brain hurts not in any way like a headache but more to the fact that every nerve is firing it's pain receptor. I actually can not even think to my self that it is horrible because the pain is so all encompassing that there is no room for thoughts to occur. I also have urinary problems, fatigue etc.. But I also am loosing weight, no matter what I do. I have lost about 60 lbs now, 40 lbs ago I was concerned now I hate the scale. My sister who has MS thinks that it is a wasting syndrome. I do have migraines and wonder if the second Dr got his diagnosis from either my medical chart or med list.
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Re: Don't know anymore

Postby jimmylegs » Sat Oct 14, 2017 4:43 pm

hi and welcome. have you been referred to a dietitian in the past? do you have any bloods on file showing nutrient status? curious if your docs have ruled out all such possibilities.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Don't know anymore

Postby MnRdunck » Sat Oct 14, 2017 5:22 pm

Lupus is ruled out I have a online mychart kinda thing and when I read other peoples posts I looked at my B12, iron, and other blood work levels. Everything is within range. As far as diet I have been a vegetarian since I was 18 almost some 30 years. My weight has been steady for a very long time. Nothing changed now I eat more and even include ho ho's and ice cream where I did not before. I eat dairy.
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Re: Don't know anymore

Postby jimmylegs » Sat Oct 14, 2017 5:58 pm

ruling things out is important. having your levels on hand is important - excellent.

can you share your serum b12, ferritin etc status?
do you have serum zinc on file?
serum magnesium etc?

re vegetarian - pre-dx, me too.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Don't know anymore

Postby MnRdunck » Sat Oct 14, 2017 8:05 pm

Vitamin B12 386.0 pg/mL 200.0-944.0 Final
Ferritin 75.6 ng/mL 22.0-322.0 Final
Iron 97 ug/dL 65-175 Final
BUN & BUN/Creat Ratio / both a little low
Bilirubin Total / a little high
and that is about all I have besides cholesterol
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Re: Don't know anymore

Postby jimmylegs » Sun Oct 15, 2017 12:26 am

ok that's something at least!

b12 could be a bit higher (min 500 or so) to be on the safe side. it's the oldest and best known differential dx nutrient for ms.

ferritin looks good.

any chance you could have tests for serum magnesium, vit d3 and zinc done? can you estimate your daily dietary magnesium intake in milligrams? which foods are you using to achieve 18-40mg per day for dietary zinc?

also, do you have a fatty acid regimen in place?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: Don't know anymore

Postby MnRdunck » Sun Oct 15, 2017 7:21 am

jimmylegs wrote:any chance you could have tests for serum magnesium, vit d3 and zinc done? can you estimate your daily dietary magnesium intake in milligrams? which foods are you using to achieve 18-40mg per day for dietary zinc?

also, do you have a fatty acid regimen in place?


I really do not know any of that. I get a new family doctor the 24th. I have not really been tested for D in years it had been low and I was put on 2,000 units. But as I said that was years ago and no one has checked since then, just happy to keep writing vitamin D for years. My diet is not really that much vegetables or fruit, I am a bad vegetarian 8O . I eat mostly fake meat products, beans, soups, bread, cheese and more cheese. I really do not count anything I eat, I just eat. But as I said this is the same diet I have had for years and my wife eats the same thing. She is gaining weight and every time I weigh myself there is less of me. I have some sort of wasting syndrome. That much I do know. Since my sister told me about how MS can cause this I have looked into it myself and it appears to happen. Maybe I just do have migraine lesions, a bad back, shake for some reason and have cancer or something but it does not explain the attack thing that happened.

Because that makes me really think that there might be something to the MS. It was that attack of extreme pain I had. Over a week it slowly built up to that, then one day back to normal. It was so extreme and it just came on then it was gone one day when I woke up. The other thing that I thought about last night when I went to sleep was something I had read about temperature. That week of what ever you want to call that happened to me, is when the weather got colder. The day it got worse I had to turn on the heat. I turned it up to 68 it was about 60 in the apartment at the time, and I had to put my socks on. I am always bare foot unless I am going somewhere, which is hardly ever. Also I had wrapped up in my robe which is like a thick blanket in itself and then went into bed under the blanket. I pretty much was bed bound for two days. I really thought that I would become a cripple in my apartment. (I even ate in bed.) I was cold for two days everyone else was hot. The day it was over I woke up out of the blanket, and took my robe and socks off, as I was very warm. I also was had to turn the heat down to 62 and no I had NOT been running a fever. My wife had checked for that. I did not sweat during that time either, like you would expect with a fever.

Here is what I have noticed as things that are wrong with me neurologically: shaking, jerking, fatigue, chronic pain, worsening pain, numbness, weakness, ataxia, dizziness, migraines, very bad nerve pain.
Things I did not consider to be neurological but I have heard could be related to MS: bladder problems, bowel problems, attention span, depression (I have a severe depressive disorder), irritability, mood swings, (they think I might have developed a personality disorder late in life), weight loss, hearing loss, memory loss.

So yeah they could be MS but they could also be a bunch of happy little coincidences, independent of each other. This is why I don't know. The MRI does say MS. I have the written report. It goes into time and space criteria. But it also says, oh never mind here is what it says, all of it:IMPRESSION:
There is several foci of abnormal signal in both cerebral hemispheres with two foci better demonstrated on the current examination than the prior study. In the appropriate clinical setting, these findings would satisfy both the dissemination in time criteria and the dissemination in space criteria for multiple sclerosis.

There apparently was a prior MRI of my brain without contrast because of my migraines. What they had found was a 2cm arachnoid cyst. I call it my spider. My spider is in the direct path that my migraines take through my left eye and out where he lives, in my bottom left cerebellum. But no mention of lesions. Different radiologist, but worth mentioning that the first Neurologist specified that this guy would be the one to read it. Also worth mentioning that the radiologist does appear on pretty much all my back MRI's and he had not been specified for those. And what he wrote in the new MRI dated 04/20186 is a key word WOULD, not does. The lesions were listed as diameter except the two larger lesions were triangular. A shortened report of the findings are below:


There are a few foci of abnormal signal on the FLAIR scans. A 3mm juxta cortical focus in the right frontal lobe. A 5mm focus lateral to the anterior to the left frontal horn. a 3mm focus inferior to the anterior tip of the right frontal horn. a 6mm triangular focus posterior to the posterior (no I did not type that twice) to the right occipital horn. a 6mm triangular focus surrounding the posterior aspect of the left occipital horn.

Just five of them. And he compares these to my prior MRI. But like I said another Neurologist who presumably read the films himself said that migraines caused these, but he could have known my medical history of them and or my medication list including both a migraine medication and a preventative.

My health problems are: Severe depression, PTSD (Not Military), Bi-Polar (I don't think I am; my high's are too low), heart problems (not heart disease), chronic pain, bad back (more like bad spine), COPD, migraines, allergies. And that is all I can think of now that my cholesterol is normal, well my good is a little off. I apologize if this is too much to take in all at once.
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Re: Don't know anymore

Postby MnRdunck » Sun Oct 15, 2017 7:40 am

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Re: Don't know anymore

Postby jimmylegs » Sun Oct 15, 2017 9:42 am

in the states you can requisition your own nutritional bloodwork without the doc's involvement.

bad vegetarian = giant red flags health-wise. essential nutrients are just that. one aspect: babies are born with wildly variable liver zinc stores. one could expect that to change over time based on lifestyle factors. vegetarians need 150% daily zinc intake compared to that required by meat eaters. how long have you and your wife each been vegetarian, respectively?

does your wife also supplement d3 2000 IU per day? at a minimum without also supplementing cofactors, there's a possibility that the d3 is helping deplete magnesium levels. that could contribute to migraines (when i get symptoms of a visual migraine, a quick boost to magnesium levels sorts them out) and pain (i use magnesium instead of pain killers - sole exception in recent years being post knee reconstruction surgery.. magnesium can handle the headache and/or muscle cramp variety of pain quite handily though)

last time my weight dropped like a stone was when i was strict vegan and took trail mix out of my work lunches. (because of the fat - idiotic)

with dietary restrictions in the lifestyle mix, you could be very wise to ensure none of the symptoms your docs have been working with are simple side effects of suboptimal nutrition. many of your stated problems could respond to optimizing your nutrient status. a dietitian can help you zero in on the most important tweaks to your bad vegetarian routine.

you also may have instant local access to tests of interest for ms patients via services like life extension, eg:

http://www.lifeextension.com/vitamins-s ... blood-test
http://www.lifeextension.com/Vitamins-S ... Blood-Test

because these results generally come back 'normal' that's usually about as far as it goes with a mainstream doc. but ms patient levels are often LOW normal while healthy folks' levels are more often HIGH normal. can be worth knowing more than your docs about all this stuff!

i'd be very interested in seeing what effects might be experienced via optimizing your serum magnesium and zinc levels. worst case scenario, you find you are already in perfect nutritional condition and no action is needed, second worst case scenario you end up in better shape nutritionally but don't notice an immediate difference. in my personal xp i would say that fixing zinc helped my brain the most, while fixing all nutrients and especially magnesium helped my body. (this involved a switch to whole food omnivorous diet - but i still boycott industrial animal ag). first change i followed was per klenner: a 'high protein diet with 2-3 eggs for breakfast'. made sense because it represented a change to status quo. meanwhile my ND (another ms patient) was telling me to avoid eggs. she didn't really have experience with vegans i don't think. guess which one of us uses a scooter to get around these days? hint: not me.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: Don't know anymore

Postby MnRdunck » Sun Oct 15, 2017 11:05 am

I am 47 and became vegetarian some 29 years ago not really for the animals per say but more due to really bad food poisoning from meat. Never could eat it again. The wife is 46 and became one at age 14 more for the animals than me. She does not take D at all. But the huge difference is I really try not to leave my apartment due to bad PTSD. So I do not really get that much sun. I take morphine for pain for my neck, back and left shoulder. So far one surgery on my back (tethered cord syndrome) and four on my left shoulder. It does need a fifth but there comes a point when enough is enough. My cheek bones are sunken in now so the weight thing is not something minor but a giant warning. I am sure that I can have my magnesium and zinc checked after the 24th. So would low zinc/magnesium explain what had happened leading up to Wednesday?
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Re: Don't know anymore

Postby jimmylegs » Sun Oct 15, 2017 12:19 pm

for me it was 15 yrs of increasingly rigid dietary restrictions before the nutritional wheels came off per se ;) and landed me in hospital getting MRIs and so forth. one could expect a less strict vegetarian to hang on a bit longer.

sorry to hear about the food poisoning i can see how that would put one off. i've never gotten over 24 hr flu after italian fish soup as a teen. one could suspect food poisoning there too but i was the only one affected and the whole family ate it. ??? who knows. either way it ruined me for fishy soups, and i hadn't been big on seafood to start with.

you taking d3 without cofactors while your wife did not could lead to reduced magnesium levels in your case, as would chronic stress and surgery. depression is also associated with low serum mag. same with shaking, fatigue, pain, numbness in some cases, migraine, irritability, mood swings and i think even hearing loss but i'd have to double check that last because i only recently encountered that little nutritional tidbit for the first time. bowel and bladder problems i'd need more info before i could link up to any nutritional influence but magnesium in certain forms is laxative and as a relaxant it can reduce spasticity in the urinary tract. fyi i lived with a friend for a year who had a bipolar dx and while under my nutritional influence she was able to break her cycle of psych ward visits for the first time since dx.

the weight loss does sound like a bit more than just nutritional but just to clarify, you mentioned you eat the same foods as your wife. what about servings and serving size? have you noticed any issues with your appetite? oddly when zinc is low, appetite can be affected which does the fundamental problem no good whatsoever.

glad to hear you can have serum magnesium and serum zinc checked after the 24th. no need for RBC magnesium if it comes up - RBC mag has the same issues re interpreting results within the normal reference range, and it costs more for the test as well. serum mag is a fine first go. i've never seen anyone come on here and report high normal serum mag. anecdotal evidence suggests those ppl are out being healthy, not perusing ms forums lol.

my mri and other tests all satisfy the criteria for ms (had to have 10 lesions though i think?) but at the same time i have the characteristic constellation of nutritional issues that landed me there and which i have in common with other ms patients according to research, but which are not typically dealt with in mainstream ms patient care. similarly, dr teri wahls whose ms dietary protocol includes lots of animal products. my first and most significant recovery, esp from ataxia (major relief!!), was via an oral version of the ancient (1971) 'klenner' protocol for ms. involved tons of b vits and vit E. no vit D because the research hadn't progressed far enough at that time. anyway at first i laid all the recovery at the feet of the b vits but later when i realized vit E deficit was associated with ataxia and my stupid version of vegan contained next to no vit E, i starting thinking that had probably played a part as well. it's impossible to pin down exactly what helped, given that i changed my entire diet as well as implementing a diverse supplement regimen.

i'm curious about your heart issues as magnesium can play a role there as well. can you elaborate? also sry that felt kind of all over the place but i feel confident blaming you for that lol ;)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: Don't know anymore

Postby MnRdunck » Sun Oct 15, 2017 1:38 pm

Well the heart was more of a bleeding issue. I had a hiatal hernia that was so bad that it ruptured an artery essentially causing me to bleed out. Kind of a story in it's own but they brought me back, not in the ambulance, but not until I was at the hospital. Because my heart had no blood to pump it stopped they call it a heart attack but there is no heart disease. I just got back from my mom's she is up a bit on health said something about the body being able to synthesize vitamins but not minerals, and got on me about not eating enough greens. But said my potato and bean consumption was something at-least. Most of the fake meats I eat are Quorn, Morningstar, or Boca brands. I generally eat more than my wife and I eat things now like ho ho's and ice-cream, she does not. The one and only reason I eat that junk is my weight. I do not even like to get undressed anymore. I will say what I know my family must think maybe it is cancer and well you know.
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Re: Don't know anymore

Postby jimmylegs » Sun Oct 15, 2017 2:06 pm

ouch okay i am seeing suggestions that spasticity may produce hiatal hernia over time but i can't get into the full text right away to check context. still, low mag could contribute to any spasticity in the mix.

ppl can't synthesize *essential* nutrients be they vitamin or mineral. that's what makes them essential. we can synthesize vitamin d3 (making it a non-essential vitamin - and technically it's not even actually a vitamin for that matter) with the appropriate amount and intensity of sunlight, ie at the right latitudes, also with younger, paler, less covered skin, AND with enough mag in our system. also presumably sufficient lipids are needed, since d3 is fat soluble after all, and its precursor is 7-dehydrocholesterol.

ah the c word. another excellent reason to have a peek in on zinc status. i really can't see low zinc being the sole explanation for your weight loss, but zinc is a real issue to watch as a vegetarian and it is true that in my case i was definitely zinc deficient when my weight dropped the most suddenly. i just found out about it when i quit the trail mix. it was as if the only thing that had been keeping my weight in place was that daily trail mix serving.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: Don't know anymore

Postby MnRdunck » Sun Oct 15, 2017 4:06 pm

My weight started to go down a year ago, 20 pounds but since February an additional 40 pounds. I guess I am hoping for a better outcome then the probability. Go figure someone who hopes for MS. When cancer is the other choice, yeah I guess that is what I hope.

I still am hung up about what happened though and you did not answer that. Please if you can what would cause me to start feeling more pain. I noticed it around Monday, then by Wednesday it reached the point where I was bed bound could not imagine any pain worse than that. Pretty sure that I only had a few days of being able to walk left. Only able to sit less than 5 minutes at a time. Thursday the same. Then waking up Friday morning and being suddenly back to how I was before even Monday's pain? Just normal for me again, kinda out of the clear blue. Can sit for hours again.
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Re: Don't know anymore

Postby jimmylegs » Sun Oct 15, 2017 5:00 pm

oh fair enough. basically it's pretty impossible to guess what could have been going on over such a short time period. i also am short on quite a lot of detail which could possibly help figure this out. i'm wondering if you'd characterize the painful flare-up as a cramp or spasm at all? burning pain? bone or muscle? joint? where was the pain located specifically?

in the meantime, i've ended up in the lit on breakthrough pain (none of which seems to last for days on end however) in the context of chronic pain, and have landed back at the c word. i'm even more interested in the serum zinc level now. and serum copper now that i think of it.

http://www.lifeextension.com/Vitamins-S ... Blood-Test
http://www.lifeextension.com/Vitamins-S ... Blood-Test

i don't know if you saw this post: natural-approach-f27/topic29448.html#p249821

the last personal friend of mine lost to cancer was also a vegetarian. i had concerns about her zinc and copper status but never had the opportunity to follow up :'( before that when my friend's mum was diagnosed, i did get a chance to review diet. the zinc gap was obvious but by the time i'd seen the info, it was too little too late. never did see bloodwork for either, so all speculation at the end of the day.

check out this in general
https://scholar.google.ca/scholar?q=ser ... 00&as_yhi=

and this in particular

Zinc, Copper, and Magnesium and Risks for All-Cause, Cancer, and Cardiovascular Mortality
http://journals.lww.com/epidem/Abstract ... or.17.aspx
Abstract excerpts:
High copper values (4th quartile) were associated with a 50% increase in relative risk for all-cause deaths, a 40% increase for cancer mortality, and a 30% increase for cardiovascular mortality compared with low values (1st quartile).
High magnesium values were negatively related to mortality with a 40% decrease in RR for all-cause and cardiovascular deaths and by 50% for cancer deaths.
Additionally, subjects with a combination of low zinc and high copper values had synergistically increased all-cause and cancer mortality risks.

i've left the last sentence off the abstract bc i think they may have screwed up the translation and i don't have time to dig in on the full text right now!

also (and this was the kind of thing that had me concerned for my late friend)

Apparent copper absorption from a vegetarian diet
http://ajcn.nutrition.org/content/74/6/803.short
"Although copper was less efficiently absorbed from a vegetarian diet than from a nonvegetarian diet, total apparent copper absorption was greater from the vegetarian diet because of its greater copper content."

The iron and zinc status of long-term vegetarian women.
http://ajcn.nutrition.org/content/34/6/1042.short
Iron and zinc status of 56 Seventh-Day Adventist Canadian women (mean age 52.9 +/- 15.3 yr) following vegetarian diets for 19 +/- 17 yr were investigated.
mean serum zinc (99 +/- 24 microgram/dl),

although the zinc level is okay in the above, it's a ways away from optimal (120) seen in numerous studies looking at healthy controls. and you do *not* want a low zinc high copper situation. high copper zinc ratios are no good. related research:
https://scholar.google.ca/scholar?q=ele ... as_sdt=0,5
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Posts: 10766
Joined: Sat Mar 11, 2006 3:00 pm

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