Long term symptoms but an answer maybe coming...

[nikkikl]

I should confess at this stage that my diet and lifestyle is abysmal. I am barely eating, barely drinking, barely sleeping, stressed out by my husband, a 7 month old baby and the boss from hell. I never get out as I work from home and I'm probably depressed. I do take a multivitamin after a lecture from my chiropractor of all people, that synthetic multivits are not effective and I should only take food derived ones. Which I do now. But they can't battle the nutritional deficiencies I probably have alone. So I'm guessing my bloods will reflect that, and I'll confess that to my doctor too. This flare I'm going through right now is by far the worst I have ever had and I've had them on and off for years, so I've always known something was wrong. The steroid infusion is helping me immensely though but I need to tackle this thing head on and make changes, to preserve my own sanity! Thanks SO much for your input on these test results, it's VERY helpful

[jimmylegs]

oh noo that sounds like so much no fun

so what are the main barriers right now, to you eating and drinking better? can you elaborate on why you think you're not sleeping? what's hubby's deal? and jeeeeez babies (JK!!!). boss from hell too. well you have the perfect storm going on over there don't you :S ouch.

glad to hear you're on a higher quality multivit. at least that way you have a better chance of the components being properly balanced.

i'm glad to read that you plan to make changes even though the drugs are helping. i wonder how many people out there are just doing drug treatments alone and perhaps allowing them to mask fundamental nutrient issues.

i hope the doc is receptive to your request for some additional less mainstream nutritional testing.

will check back in again soon.

[nikkikl]

My main barriers to eating and drinking are bad habits, no appetite since my pregnancy and the baby being born which in itself was a huge stress as he was 2 months early by emergency c-section, in NICU for a month then had emergency surgery for an incarcerated hernia one week after coming home! We've battled with severe silent reflux since making him ultra high maintenance. That's all calming down now and he's thriving but getting him there has taken its toll on us. My husband is very stressed at work, his dad has just been diagnosed with terminal pancreatic cancer and my MS issues just seem to be more than he can take as we are both emotionally drained. So the last 7 months has been tough and this mega flare has pushed me to the edge. Food, drink, sleep and calmness has been an afterthought made worse by bad habits. But, these steroids have cleared my mind and I think they are balancing me so I can pick myself up, look after the baby and start being more productive and calm. It's certainly been a perfect storm but the MS diagnosis was a relief.

[jimmylegs]

lots of challenges :S are you a picky eater? or do you feel that if you get determined, do you think you'll be able to make some effective changes and stick to a new food and fluids regimen?

if i could suggest one preliminary thing just to help with the stress, order a container of this stuff:
https://naturalvitality.com/natural-calm/
and make sure you and your hubby both drink some daily. it's called natural calm for a good reason ;) it works!
the 2 tsp of powder per serving basically provides what your body needs for maintaining mag status. you'll be low probably, and since you're dealing with extra stress as well, you could stand to try for 3 tsp per day.
"Directions for Use: Pour about ½ cup slightly cooled boiling water, or very hot water into a cup or glass. Add powder, let fizz, stir. Add to favourite hot or cold beverage, or enjoy like a cup of tea."

could i ask you a couple of random-sounding questions? ie, how's your sense of taste and/or smell? what about night vision?

[nikkikl]

I was going to say I'm not a picky eater, but since moving to the USA I've become very aware of the chemicals, additives, hormones and other nasties that are allowed in food here, so I try to eat organic only. Easier said than done when just getting out of the house is a challenge! Now that's not to say that food in the UK isn't additive free but it's far more strictly regulated. What started my change in eating organic was the quality of some food is noticeably different here. For example, milk produced in the USA is banned in Europe due to hormones injected into cows, tuna/tilapia is banned due to the countries it is obtained from allow the fish to eat animal poop... the list goes on. So I'm not picky, just choosy I guess. I am an appalling cook though! I will definitely order the natural calm and order it tonight, thank you for that suggestion. I take probiotics too, I need to extend it to prebiotics and get my hubby on them both. He has IBS so that will help. The baby is on them both and there's no doubt they have helped his gastric issues.

My sense of taste and smell are great. I stopped smoking around 18 months ago so they are rocking now! I do Vape nicotine at the lowest level, but I don't smoke, it's steam, it's my only vice. My hubby is very addicted to dip (gross), and smokes weed for stress management although he has it legally and prescribed medically for a bad back. He doesn't smoke indoors, that's banned. I won't touch it. Night vision is so-so. My eyes took a turn for the worse during the flare but came back to normal after a couple of weeks. They've been ok since.

[jimmylegs]

sounds like you're the right kind of picky. let's call it... logical ;) i'm with you on choosing organic milk and avoiding tilapia. i don't even know what the rules are in canada but i've always avoided tilapia b/c it tastes like it was raised in sewage. guess there's nothing wrong with my sense of taste either ;)

*great* to hear you quit smoking. based on the smoking history though, your pregnancy, the lack of appetite, the msdx, and the baby's issues, i will be really interested to see the results of any additional nutrient tests you are able to order next time you see the doc! which reminds me - what have you got on the list for monday so far?

[nikkikl]

Ok, I see some new results in my Patient Portal... they are:

B12 - Value: 784 Reference Range: 132-653 pg/mL
RDW - Value: 15.9 Reference Range: 11.9-15.2 %

MRI BRAIN W/ + W/O CONTRAST:
1. Significant white matter change both cerebral hemispheres predominantly subcortical in distribution, not the typical distribution of demyelinating disease. A number of these lesions demonstrate enhancement. They are punctatefoci of enhancement. Findings are nonspecific. Differential considerations are of unusual manifestation of MS. ADEM is an additional consideration.Neoplastic or infectious process felt to be less likely but not entirely excluded. 2. Posterior fossa relatively spared. 3. Pineal and pituitary normal. No Chiari malformation.

MRI THORACIC SPINE W/ CONTRAST:
Multifocal lesions of the spinal cord irregular in appearance. In view of the findings present within the brain MRI, the findings are compatible with a demyelinating process and may represent MS

Have I missed anything?

[jimmylegs]

ok there, so your b12 is higher than the lab's reference range, but not necessarily anything to lose sleep over... (unless it's high because you happened to take a lot of supplemental b12 in the morning - that can disrupt circadian rhythm and keep you up at night)

The pathophysiology of elevated vitamin B12 in clinical practice (2013)
http://qjmed.oxfordjournals.org/content ... med.hct051
"High serum vitamin B12 is defined by a rate above 950 pg/ml (701 pmol/l), which corresponds by biological standards, to the upper limit of biological normality, in the absence of any sign and/or clinical anomaly.1 It should be noted that older studies (before the 1990s) are not to be considered, given that the assay of vitamin B12 has only been standardized in recent years."

as for RDW here we need to get into a few things:

"Mean corpuscular volume (MCV), mean corpuscular hemoglobin (MCH), and mean corpuscular hemoglobin concentration (MCHC) were first introduced by Wintrobe in 1929 to define the size (MCV) and hemoglobin content (MCH, MCHC) of red blood cells. Termed red cell indices, these values are useful in elucidating the etiology of anemias. Red cell indices can be calculated if the values of hemoglobin, hematocrit (packed cell volume), and red blood cell count are known. With the general availability of electronic cell counters, red cell indices are now automatically measured in all blood count determinations.

Variation in the size of red cells (anisocytosis) can be quantified and expressed as red cell distribution width (RDW) or as red cell morphology index."

so your result would seem to indicate that the difference in size between your smallest and largest blood cells is unusual, so there's potentially something going on there.

from the literature: http://www.ncbi.nlm.nih.gov/books/NBK260/ "The normal value for RDW is 13 ± 1.5%." so a little narrower and lower that what's been seen at your local lab. so your 15.9 result looks even higher by that standard.

[jimmylegs]

so looking at your blood a bit more closely...
HGB 12.9 g/dl
HCT 38%
MCV 85 fL
MCHC 31%

the klenner protocol for ms specifies a hemoglobin of at least 13, so at 12.9 you're close but could be a bit better to be on the safe side.

mcv is 10xhematocrit/rbc count =10x.38/4.47=85 which puts you right at the cutoff for macrocytic anemia for those age 15 and up. given your perfectly fine b12 status at the same time, and the slightly low Hb, it could just be an iron thing.
http://www.fpnotebook.com/hemeonc/lab/MnCrpsclrVlm.htm

it would probably be wise to look at an array of serum nutrients, serum ferritin for one, to make sure everything is optimized, and then see whether your other measures sort themselves out accordingly. which brings me back to the question of which additional tests you might be considering for next trip to the doc? maybe i am getting you mixed up with another member - will have to go back and check earlier posts in this thread! update: nope it was this thread - you "I can post those here but I have a regular Dr appointment on Monday so if any are missing, I can ask him to order them." me "if you are developing a list of requests to take to the doc based on what you've read here, feel free to post, to make sure the details are right"

[nikkikl]

Interesting that they grayed out the questionables - or maybe they are in red on my black and white printout and didn't print properly. So, when I go to the regular doc on Monday, can you advise me on what I should be asking him for and why, just so I don't sound so dim? My guess is that he will look at these results and say nothing, as is usual. I've seen results slightly out of the norm before and he's never said anything about them so I just took that as him not being concerned. Maybe I am too trusting on that front? This must be the time to question everything. He's a nice guy but when I first saw him about dizzyness last year he said it was vertigo, maybe - and he said that knowing my history so it was a little disappointing now I look back on it. Only when I went back a year later with the much much worse symptoms did he sent me to the neuro along with some free samples of Lyrica. They were crap!

I would agree on the iron and it really wouldn't surprise me if I was borderline anemic. I am not a big red meat eater, well I guess I'm not a big anything eater right now! But that will be changing. I can see over the last few days that I am very dehydrated - my hands are shriveled which is made worse by losing weight (although that's a good thing as I did need to) so I'm ramping up the water now in a desperate attempt to re-hydrate my pruney look. I suspect the dehydration is partly why I am smothered in bruises from failed IV attempts by the poor nurses struggling to get a line in every day for the steroids. My own fault

What's your take on the MRI notes? The neuro was way more specific when she was talking to me and my husband about the results but seemed to sit on the fence on the notes. She certainly said this was MS, assuming it's not Lyme Disease (highly unlikely, she said, given my history) She also said we MAY have to do more tests like a spinal tap but it's not something she foresees as necessary, given the MRI results. I won't be seeing her again until 20th Feb so I guess I'll get more scoop then. That is scheduled as the appointment to work up a meds regime after we have found out which MS drugs our insurance will cover and after I have had some relief from the steroids.

[nikkikl]

OH! I should mention this too - I take Omeprazole for acid reflux and I know that has a big effect on Magnesium absorption levels and Calcium too. Sorry, should have mentioned that before! I have ordered the drink you recommended though One cherry, one lemon

[jimmylegs]

yay i hear cherry is really good! another friend is a huge fan of raspberry-lemon. i have only tried plain, myself.

you might find that boosting up your magnesium status could help with your reflux issues and get rid of the need for future omeprazole. if your reflux is due to a spastic improperly functioning LES, a little magnesium in the mix might do you some good. one thing to note though, one time when i was using magnesium bisglycinate i stupidly took it (over a prolonged period) on an empty stomach before bed and it relaxed my LES too much so i ended up with the same stupid reflux issues. the magnesium in natural calm is milder so you shouldn't find yourself getting too much. to be on the ultra safe side, yes have the drink on an empty stomach to optimize absorption, but don't make it that last thing that goes in your stomach before you lie down.

i think the questionables are more highlighted or red flagged rather than grayed out. i think you're right about the printing issue.

if i were you i would request serum zinc, serum ferritin, serum copper, serum magnesium, and serum 25(OH)vitaminD3. say that these are all nutrients of concern for patients with ms. just give it a shot. if he says yes great, and if he says no, you could show him some research (see below) and if that doesn't work you could ask for a referral to a nutrition specialist, OR failing that, ask if he can recommend a private lab that you could use (doesn't really matter that info is readily available but still..). i think if you demonstrate determination, but do so in the context of asking for his help with alternative ways to get the info, you might get some buy in.

one of these days i will have to redo my list of relevant abstracts but for the meantime, you could always print and take in these abstracts for justification:
http://www.thisisms.com/forum/general-d ... ml#p128490
i wouldn't recommend printing that post, but i would suggest searching for and printing out the actual study abstracts then manually highlighting the relevant bits of text that i've included in the post. i would think the doc would be more receptive to a few research abstracts, than he would be to 'so this person i know from the internet told me yadda yadda yadda' ;)

while searching for the above i ran across a post i have to say i quite liked when it was initally written ;)
http://www.thisisms.com/forum/natural-a ... ml#p131686

[nikkikl]

Ok, cool. I'll ask for those bloods to be done as they are recommended in the MS sites I have read and researched. I learnt through dealing with my sons Pediatrician never to refer to forums, be vague on actual sites but definite what has been found out by researching. They can't be bothered to check anyway. Me and hubby have been talking about seeing a nutritionist anyway, actually he's pushing for it more than I am so I think that would be a good avenue to explore regardless. I would love to get off omeprazole and I would REALLY love to get my baby son off it too. But that's a little more complex than me. I'm excited to see if levelling off the mag and calcium will help. I'll be sure to drink the Natural Calm in the morning Jimmylegs, you are helping me So much, I can't thank you enough.

[lyndacarol]

OH! I should mention this too - I take Omeprazole for acid reflux and I know that has a big effect on Magnesium absorption levels and Calcium too. Sorry, should have mentioned that before! I have ordered the drink you recommended though One cherry, one lemon

From this 13-minute video, Folate & B12 Deficiency, Megaloblastic Anemia, Hypersegmented Macrocytic Methylmalonic…



"If there is a deficiency of stomach acid due to disease or medication (like proton pump inhibitors or antacids) it can cause decreased absorption and B12 deficiency."


And from this 19-minute video, Vitamin B-12; New Understanding and Approach to an Old Problem from the University of Wisconsin, Department of Family Medicine



@11:00 "Omeprazole reduces vitamin B-12 absorption or availability."



With your serum B12 value at 784 (Reference range: 132-653 pg/mL) it may appear that you have no deficiency in your blood. If you have a deficiency in the protein transporter (transcobalamin II), it may be that B12 is not reaching the tissues – you may still have a deficiency in the tissues. You and your doctor might discuss a possible HoloTranscobalamin (HoloTc) test to rule out this possibility.

Notice @5:30 the explanation of how the vitamin B-12 level is established for diagnostic tests:

"What is a normal level? And how is it establish? A "normal" laboratory level is established by taking a population mean and determining two standard deviations from that mean and that is considered the "normal range." Often times there is no clinical correlation to those numbers."

[lyndacarol]

Ok, cool. I'll ask for those bloods to be done as they are recommended in the MS sites I have read and researched. I learnt through dealing with my sons Pediatrician never to refer to forums, be vague on actual sites but definite what has been found out by researching. They can't be bothered to check anyway. Me and hubby have been talking about seeing a nutritionist anyway, actually he's pushing for it more than I am so I think that would be a good avenue to explore regardless. I would love to get off omeprazole and I would REALLY love to get my baby son off it too. But that's a little more complex than me. I'm excited to see if levelling off the mag and calcium will help. I'll be sure to drink the Natural Calm in the morning Jimmylegs, you are helping me So much, I can't thank you enough.

Vitamin B12 is absolutely VITAL to the development of a baby! Please be sure that your son has enough B12, that he is not taking a medication that will block that vitamin.

*****5-minute video with Dr. Paul Thomas, pediatrician:

"Why You Should Be Taking B12 – Pediatric Advice"