Could this be something else

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Re: Could this be something else

Postby Rowena » Thu Aug 23, 2018 1:00 pm

B12 was from my Dr Google information. I slept probably 1-2 hours a night ( so maybe like 6 hours over the course of 4 days) so I had a lot of time to research. I found B12 deficiency can be confused with MS sometimes. This bottle is spring valley 500mcg per tablet and it is cyanocobalamin. I don’t get the same every time though.

I do not see that test result anywhere in any of the labs they did. Pretty much the Dr decided it was MS and only did tests to support that. (well that and bacterial meningitis… which if it was that I am pretty sure they would have not let me leave the hospital and wait 3 weeks to do this test. ) So I really just want to rule out all of the things that this can be instead of MS. B12 deficiency was the number one thing I found that seemed to fit everything.
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Re: Could this be something else

Postby jimmylegs » Thu Aug 23, 2018 2:33 pm

interesting - i'm curious how it made sense in your case specifically, to decide you could have a b12 issue. literally only from matching symptoms?
is there any lifestyle correlation? how were your b12 sources from diet, during the time leading up to first neuro symptoms?
has taking b12 had any tangible impact on how you feel day to day?

diagnosing ms is a process of exclusion. b12 deficiency should be on the list of things to exclude prior to arriving at an ms dx.

if you have a reasonably suspect background where b12 is concerned, you still may be able to make a case for testing.
if your doc knows you have been supplementing b12 though (and barring any new info, 500 mcg per day should be loads), he does have a case for saying no to the test.
the alternative would be stopping supplementing for a washout period, and returning to your status quo when things came to a head and sent you down this track.

depending how long you've been supplementing b12 for though, it may just be too late to get a clean read on background levels.
you may have successfully replenished tissue stores (yes we do store water soluble vitamins - b12 hangs out in the liver)

fwiw - in my case, the b12 test was done, but it was done too late. i was already supplementing b12 like mad, and it messed with the test result so that it came back a reasonable low normal level. i brought up my atrocious b12 history and the docs asked me to stop supplementing so they could test again, and get a clean read on my background levels.
i said no because at the time, my symptoms had not stopped getting worse and i was terrified. the rest is history yayyyy msdx confirmed ta da.
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don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby Rowena » Thu Aug 23, 2018 3:14 pm

I couldn’t find anything else that fit. Everything else had symptoms that I don’t have. Double vision was my only symptom. I never really ate anything with b12 or took vitamins before this. I’ve tried to find something else besides ms that it can be because I honestly am having a very hard time accepting what that disease will mean for my future. Taking b12 I’m not exhausted by noon now. I can actually go to the gym after work (most days). I was refused the b12 testing so if it is b12 should my mri be normalish now?
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Re: Could this be something else

Postby jimmylegs » Thu Aug 23, 2018 3:57 pm

ok so vegetarian or something like?
don't obsess on what 'disease' means for your future - if anything this process will serve as a hugely valuable wake up call to pay more attention to your health in future, and not take it for granted.
i wouldn't think b12 supplements would reverse damage per se. there's seriously more to it all than that, ms or no. think big!
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Re: Could this be something else

Postby jimmylegs » Sat Aug 25, 2018 1:21 pm

I was diagnosed with this almost a year ago. Everyone said it would get easier and I would feel more normal every day. Not a day goes by that I don’t break down crying over what my future is going to be. The thought of people I know finding out about this makes me cry. I am so humiliated by this I have to pretty much whisper when I am talking to someone at the Dr at check in.

I want to know what I did so wrong in life to deserve this. I honestly don’t see the point in anything since it will all end in the same place with me unable to work and being fully or partly blind and needing some type of assistance to walk.I just want to feel normal again and stop crying but I don’t see how. I know my dream of this being something else if just that a dream… but it at least allowed me to feel hope for what is probably the last time in my life.

Sorry for the depressing rambling I am just realizing more and more that I will never have the life I want with this. I get angry at the "normal" people for just talking about their normal life. I just wish I could win the lottery so I could be left alone in my apartment.

sorry to hear you have been feeling down. i'm responding here so that your info doesn't get scattered and lost to future participants in the conversation. no baiting and switching!

i am interested in learning more about your entire supplement regimen. has it been b12 and only b12?

as we know, there are several vitamins in the b complex that are important for mood. the b complex (and not just b12) is also important for anyone wishing to be dissimilar from a typical ms patient.

i wonder if a high quality multi vitamin and mineral might be a useful starting point in your case, if it's been only b12 to date.

i also wonder what bloodwork results you do have on hand, shareable, and relevant to not just ms indicators but nutrient status in general.

i'm thinking of a handful that are low in the typical ms patient and also linked to depression. with the b vitamins, these include serum magnesium and serum zinc.

possible point of interest - all of these anti-depressant nutrients are readily depleted via alcohol consumption.

it's definitely sad and scary to mentally pit oneself against several more or less ominous potential diagnoses.

here's hoping you can find the mojo soon, to invest at least equal energy to traveling the 'destination health' track!! :D

your first positive homework items:

1. what was today's supplement regimen?
2. is that all you have on hand? if so, product dtls pls. if not, details of whatever else is available pls and thx!
take control of your own health
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Re: Could this be something else

Postby jimmylegs » Sat Aug 25, 2018 1:48 pm

bump
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby Rowena » Sat Aug 25, 2018 2:15 pm

I usually take B12 and Vitamin D3 in the morning (its whatever kind I bought that month so it hasn’t been a normal kind). Aniracetam and noopept , in the morning, to help me focus and help my depression. At night it is either Phenibut , Kratom, Klopin , or CBD supplements. I try to not take any of them more than one day in a row since I know they are all addictive. I have a few others that I rarely use (like 1 day every other week, but they aren’t that great and I am mostly just using them until gone)
At night I also take Magnesium and fish oil. If I don’t take this stuff I am so angry at everything and everyone and I just cry nonstop. I also have calcium and potassium supplements that I use when I remember. Multi vitamins have always made me throw up (ever since I was a little girl). I have tried probably 5-6 different kinds and I always vomit. I can look up my blood work later but I know my last CBC/Chemistry everything was normal. Actually they have all been normal except for the days I was in the hospital. One time my RBC was a little low but we figured out what the issue was on that. I haven’t had my zinc or magnesium levels tested ever.

I just want to get through a day without crying...
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Re: Could this be something else

Postby jimmylegs » Sat Aug 25, 2018 2:55 pm

ok we can use this info for sure :)

my 2c: always take some magnesium (half your daily total) at the same time as the d3.

i will have to look up all the meds listed, to check for known nutrient depletion issues if any.

finishing up the day's magnesium with the fish oil in the evening looks good.

if i were you i would skip plain calcium supplements. max 500 mg per day if you do take them. i would take cal with mag, and i would avoid cal with d3. i'm not an expert on taking calcium. i just know often the cal mag ratio in supplements is not ideal, and that calcium can cause issues when taken in combination with d3. if you do end up taking cal and mag at the same time, a 1:1 ratio is better than the typical 2:1.

in my limited xp w potassium supplements, the amounts off the shelf are stupid low. 99mg tablets when we need 3500 mg - 4200 mg per day?? please.
best over the counter product i ever saw was 600 mg. you'd still have to take a bunch in a day to match what we're supposed to get from dietary sources.

i am curious about your history with multis. can you remember some or all of the brands you tried? does your xp include a high quality, divided dose product? split into 3 a day, one to be taken with each meal?
what about even a high quality divided dose b complex?

personally, both my multi and my b complex are divided dose products, three a day. i'm in the habit of 2 of the multi and 1 of the b complex, with a few other extras added in the mix.

my worst issues with supplement-related nausea were when i had to take a lot of zinc for a month. my doc said: divide the dose and take with food, never on an empty stomach. problem solved, never looked back.

re the bloodwork, i personally don't get a whole lot of good out of cbc / chem info. ferritin is usually in there, which doesn't hurt to know. and maybe the electrolytes hint at something. specifics on things like b12 and d3 would be great, and if you can get results for zinc and magnesium sometime, that would be amazing too.

i'm curious if you have access to a private service for testing, like lifestream. i don't personally, but when it's feasible and desirable, i do point others in the direction of that or a similar service.

the free alternative involves some homework - journaling food/fluid/med/supplement intakes over several days, as you may have seen being documented to one degree or another by others here at TiMS :)

chin up, one way or another there are things you can do to help stay well and happy!!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby Rowena » Sat Aug 25, 2018 3:08 pm

I got the potassium awhile back and have been slowly trying to go through them. And I don’t remember all the vitamin brands but the most recent was once a day woman’s. I want to say alleve but I know that’s wrong for the brand. Maybe alive? I tried them with food , without food, the full dose at once, divided the dose into multiples. It just always has made me sick even when I was a young child. I have no idea about the private testing thing. I honestly have a hard time talking about this to anyone, even my dr because I feel so humiliated and ashamed and like anyone who knows is going to look at me differently.
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Re: Could this be something else

Postby jimmylegs » Sat Aug 25, 2018 3:31 pm

hi i think the multi would have been 'alive'
meanwhile 'aleve' is a pain killer
when was the last time you tried?
re private testing check this out

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

not keen on their forcing the b12 panel vs offering the components alone as well. i would tend to go for the panel only if i still had issues after say a high normal b12 level on its own

i would expect and hope that you are covered for at least some of those nutrient tests as part of an ms dx process. eg b12 at a minimum, the b12 panel if it's an option, and d3. if d3 comes back low and you get a lot of sun, it means look hard at essential cofactor status.

i can't access this kind of private testing option from here, (that is, what i can get is stupid expensive) but if i jump through the hoops most of the tests mentioned above are usually covered anyway.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby Rowena » Sat Aug 25, 2018 3:51 pm

I’ll look at the private testing stuff tomorrow from my computer. It’s easier than using my phone. I would assume I’m covered for at least some of those tests. I’m not really sure what I’d learn from then though. I really just want to wake up and find out the past year was nothing but a nightmare.
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Re: Could this be something else

Postby jimmylegs » Sat Aug 25, 2018 3:57 pm

if you can get these done, the results will more than likely come back in the part of the normal range where all the sickies hang out. if so then you aim instead for the part of the range where all the healthies hang out.
it might seem weird but in time you could view this period as awesome for the wake up call, and the learning curve.
it just sucks that our society is set up to walk ppl off a cliff before prevention becomes really attractive.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Could this be something else

Postby Rowena » Wed Aug 29, 2018 6:50 pm

So my latest blood results says I’m mildly normocytic anemic. Naturally I went back to my good old reliable friend dr google since my regular dr can’t be bothered to answer any questions. I don’t know what any of the other blood work says because the drs office won’t post it for some reason which for me implies bad news. If my follow up mri is bad news I’m done. I’m going to eat what I want, start smoking again, no more early gym days, and If I want to drink I will. If I’m going to be so alone in this my own dr can’t even be bothered to spend 5 minutes replying about my concerns I finally know how alone I really am. That’s fine though... easier to go through this alone then with people who will look down on me and judge me.
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Re: Could this be something else

Postby NHE » Wed Aug 29, 2018 8:59 pm

Rowena wrote:So my latest blood results says I’m mildly normocytic anemic. Naturally I went back to my good old reliable friend dr google since my regular dr can’t be bothered to answer any questions. I don’t know what any of the other blood work says because the drs office won’t post it for some reason which for me implies bad news. If my follow up mri is bad news I’m done. I’m going to eat what I want, start smoking again, no more early gym days, and If I want to drink I will. If I’m going to be so alone in this my own dr can’t even be bothered to spend 5 minutes replying about my concerns I finally know how alone I really am. That’s fine though... easier to go through this alone then with people who will look down on me and judge me.

That's a really BAD idea! It is well know that smoking accelerates the progression of the disease.

https://www.ms-uk.org/search/node/smoking

There are also other factors such as the fact that cigarettes are nothing but an addictive poison.

Ask yourself, which lungs do you want?

    Image


A potential MS diagnosis isn't the time to proverbially (or literally) shoot yourself in the foot. It's a time to double down and fight back for your health.

Be one of those "weirdos" who drinks kale smoothies and eats watercress salads. It'll be much better than getting cancer from smoking AND having significantly more advanced MS.
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Re: Could this be something else

Postby jimmylegs » Thu Aug 30, 2018 3:30 am

normocytic anemic is a clear enough call to action

Normocytic anemia
https://europepmc.org/abstract/med/11126852
"Normocytic anemia is the most frequently encountered type of anemia. Anemia of chronic disease, the most common normocytic anemia, is found in 6 percent of adult patients hospitalized by family physicians. The goals of evaluation and management are to make an accurate and efficient diagnosis, avoid unnecessary testing, correct underlying treatable causes and ameliorate symptoms when necessary. The evaluation begins with a thorough history and a careful physical examination. Basic diagnostic studies include the red blood cell distribution width, corrected reticulocyte index and peripheral blood smear; further testing is guided by the results of these studies. Treatment should be directed at correcting the underlying cause of the anemia."

1. your serum ferritin and hemoglobin *should* be easy to see. what were the results for those?

those (fe, hb) are the lowest hanging fruit re anemia.
here are some others to consider which may or may not be on your results already, once they come in

https://en.wikipedia.org/wiki/Nutritional_anemia

hopefully your docs are prepared to advise and act re any or all of those possibilities, not to mention the other potential causes of anemia.

2. re other test results, sounds like it's time to physically go and ask for printouts of all the test results on your file. if you meet resistance, say you will pursue other options to get your hands on your information.

the option to get testing from other providers awaits, if needed.

3. might also be time to consider adding a counsellor of some kind to your professional health care team.

4. looking forward to seeing the rest of your results once they're in!
in the meantime, i had asked when was the last time you tried any form of multi?

personally i avoided zinc at first, because it made me sick to my stomach. doc said divide the dose AND take w food (i had been instructed to take 100mg per day which is no joke all at one time). i can't just have a bit of food with zinc, it has to be at least a solid snack if not a small meal.

5. going forward in your case, i'm curious what your specific reaction would be now to one capsule out of a high quality, whole food sourced, 3 a day multi, taken with a full meal.

a nutrient dense whole food approach is obviously the logical foundation to any supplement regimen, and if additional top ups via supplements are off the list, then the food route becomes even more critical.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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