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MS? other autoimmune problem? Sport-induced partly
MS? other autoimmune problem? Sport-induced partly
Posted: Sat Nov 01, 2014 9:12 pm
by yirara
In mid July I got a surprise asthma attack in the middle of the night. I never had asthma before, and it took about 6 weeks and lots of medication to get better again.
2-3 weeks after the attack, I had just stopped oral prednisolone (only took for 6 days) I felt very confused, scared and my left lower limbs and right knee started tingling. Didn't connect this with the pills. Went to ER, got Vitamin B12 pills that didn't help. Tingling stayed, everything else went away in 3 days.
The tingling, in my left lower arm and left lower leg slowly got less over time, but comes back every time I exercise (and sometimes without sport). The stronger I exercise the stronger the tingling (lifting heavy weights slowly is ok, trying to swim 2/3 mile as quick as possible or fast weight exercise is bad). If I exercise at 16:00, then the tingling comes back at around 19:00. On the next two mornings I'll always have lost weight, usually around 1.5-2.2lbs total, on the second morning the tingling is almost gone again and my weight remains stable. Including a small attempt to lose weight before the attack, and some weight loss just after the asthma attack I've lost 22lbs now. When my left limbs tingle, all four fall asleep very quickly. Sometimes, about 1-2 per day when I don't think about it I seem to be falling though my left knee a tiny bit.
The corticosteroids I got for the attack (stopped 8 weeks ago) caused some bleeding on various tissues, lots of bruises over small blood vessels. Plus I got what looks like some tiny varicose veins (small purple) on hands, arms, legs, feet and my veins seem to be more visible. Doesn't seem to get worse anymore now. But I'm not sure if this is related or not. Normal neurological check: strength, reflexes, pointing to nose, etc.. is always ok. Otherwise: not very good concentration, very exhausted.
Hb is 13.8g/dL (12-16), Ferritin 26.9 ug/L (50-120), Vitamin D slightly low. Vitamin B12 is ok. TSH sometimes around 4, sometimes low (T3, T4 is ok). Am substituting iron and Vitamin D now.
Blood count from the asthma attack and one just now always looks somewhat not ok, but that might have been due to the attack and a urinal tract infection now. Erythrozyte sedimentation rate has always been around 20 since then.
40 years, female, no nicotine or alcohol, normal weight trending towards low now. Had tingling twice before: left hand (2010ish) and left flank (2012ish), which went away after about a week.
Doctors don't take my problems serious: I'm healthy, imagining things. I thought the same until I went swimming again on Friday and lost another 2.2lbs. Have an appointment with a neurologist in December.
I'm looking for opinons
---------------------------
edit: adding some blood results: ER in July / few days later / early August (lab range) (Note: lab range might be different from US ranges; I'm currently abroad)
count neutrophile: 5.54 / 7.07 / 7.48 (2-7)
count lymphocyts: 1.74 / 1.37/ 2.4 (1.5-4)
count eosinophile: 0.02 / 0.02 / 0.05 (0.02-0.5)
% neutrozyten: 70.2 /79.3 / 71.2 (40-70%)
% lymphozyten: 22.1 / 15.3 / 22.8 (20-40%)
% eosinophile: 0.2 / 0.2 / 0.5 (1-6%)
ESR: - / 16 / 26 (0-12mm/hours)
Creatinine 79 umol/L (25-105)
Ferritin 26.9 ug/L (50-120)
SGOT(AST) 15 U/L (0-40)
SGPT(ALT) 12 U/L (0-41)
Iron Binding capacity total(TIBC) 576.9ug/dl (174-385)
uric acid 0.23mmol/L (0.15-0.35)
Free T4 12.4pmol/L (10.60-19.40)
TSH 4mlU/L (0.25-5) (TSH in hospital in june 1.6, last year 4.5 and 1.8)
T3 and T4: were in the middle of the range, but can't find them right now.
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Sun Nov 02, 2014 6:15 pm
by jimmylegs
welcome
you've brought great info with you, excellent. i will go through what i have to contribute line by line
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Sun Nov 02, 2014 6:38 pm
by jimmylegs
magnesium (Mg): 0.63 (0.74-1.73)
i'm assuming that result is for serum magnesium and is in mmol/l since local ranges for serum mag are along the lines of 0.65-1.05 or 0.70-1.10 mmol/L. if you can confirm, that would be useful. if it is serum mag and mmol/L, you'll want to work to get that level up to 1.1 mmol/L. i can send you links for food sources or supplements if you like.
Vitamin B12 422pg/ml (200-835)
i've seen recommendations that suggest 500 pg/ml should be a lower cutoff for serum b12, since conventional lower cutoffs are based on hematological and not neurological criteria. as you've noted though, it's not likely the only piece of the puzzle since the recent supplements didn't seem to help.
25-hydroxy Vitamine D2+3 71 (no reference values, other lab test)
i typically only work with 25hydroxyvitaminD3 and a serum target of at least 100, to be done with care particularly when magnesium is a concurrent issue.
not sure what the total of d2 and d3 should be - especially without units provided. given your apparent low mag status i'm going to assume for now that the total d2/d3 units are nmol/L and that d3 is a portion of that. if you can confirm then you'll likely want to at least double your d3 level. as hinted at above though, that increase shouldn't be done without fixing magnesium first, or at the very least simultaneously. if working on d3 status and magnesium deficit together, you'll need to take in one daily batch of magnesium to meet your body's own needs and help build up stores, and then another dose to work with any supplemental d3 intake.
Ferritin 26.9 ug/L (50-120)
so clearly that's on the low side - aim for 80 anyway. if you are also low in zinc, it might be trouble to address your iron status using supplements. best to start working on low ferritin using iron and zinc rich foods if you can. zinc and iron compete with each other when in isolated supplement form, but not when they occur together in food. a serving of seafood chowder per week, made with oysters (zinc) and clams (iron) can help in that dept.
Iron Binding capacity total(TIBC) 576.9ug/dl (174-385)
high TIBC confirms that you would do well to work on your iron status.
uric acid 0.23mmol/L (0.15-0.35)
i usually work in umol with this one, which is just 230 umol/L. that is equivalent to an ms remission level. healthy controls average around 290-300 serum ua. or .29-.30 mmol/L using your lab's units since serum uric acid is positively correlated with serum zinc, we can assume that your serum zinc is on the low side. adds weight to the idea that you might want to be careful working on the iron. if you decide to work on your uric acid status by improving zinc level, make sure you start with zinc rich foods, and if you get into supplements ensure that any zinc product is balanced with some copper. (more competition - you don't want to inadvertently push copper down while working to increase zinc levels).
hope that helps
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Sun Nov 02, 2014 7:55 pm
by yirara
Thanks a lot Jimmylegs. I'll have to look through everything you wrote and consider what to do next.
I'm currently trying to get an earlier appointment in a different clinic, but I'm not sure if it works out. I'm mostly worried about the weight loss associated with tingling episodes. I can't find anything about vitamin or mineral deficiencies that can be linked to weight loss, and I'm rather close to underweight for my age now. I don't want to lose even more. So as difficult as it will be: no more sport for now and I hope I don't get too many episodes in the meantime.
With regards to the blood values: I'm trying to work it all out myself as the doctors here only look at the ranges and decide that something is within or just below the lab range and still ok. I do have magnesium pills at home, but unfortunately only that type of Mg that is not well absorbed. The supplements I can get here are rather limited, and I cannot import anything.
The vitamin D2/3 value was taken in a European country that seems to measure this value in nmol/L (quick google search). I only have a computer screen shot without reference values.
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Sun Nov 02, 2014 8:59 pm
by jimmylegs
hi again
if you only have something like magnesium oxide, it is marginally better than nothing and adding 100mg per day won't hurt.
aim for 600mg per day from diet if you can (ie food and fluids, and of course you can drop to 500 if you do work in a supplement containing 100mg of elemental mag).
healthy food sources with amounts per serving http://www.whfoods.com/genpage.php?tnam ... #foodchart
(choose organic whenever possible - conventional produce is likely to contain more phosphorus and cadmium, at the expense of magnesium content)
here's something you might not have come across before: http://europepmc.org/abstract/med/6616939 "The clinical manifestations of mild zinc deficiency include ... weight loss and hyperammonaemia"
while you feel bad and are dealing with weight loss, you could consider trying for 50mg zinc per day from food.
same website whfoods has similar nutrition charts for pretty much everything you could want
if you get a chance, a serum zinc blood test done at the same time as your next serum UA test could be useful. with that one, you often want to be right up near the top end of the normal range (or even above the top end, depending upon how the neighbourhood lab has its ranges set up).
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Mon Nov 03, 2014 8:41 am
by lyndacarol
yirara wrote:In mid July I got a surprise asthma attack in the middle of the night...
2-3 weeks after the attack, I had just stopped oral prednisolone (only took for 6 days) I felt very confused, scared and my left lower limbs and right knee started tingling. Didn't connect this with the pills. Went to ER, got Vitamin B12 pills that didn't help. Tingling stayed, everything else went away in 3 days.
The tingling, in my left lower arm and left lower leg slowly got less over time, but comes back every time I exercise (and sometimes without sport). The stronger I exercise the stronger the tingling (lifting heavy weights slowly is ok, trying to swim 2/3 mile as quick as possible or fast weight exercise is bad). If I exercise at 16:00, then the tingling comes back at around 19:00. On the next two mornings I'll always have lost weight, usually around 1.5-2.2lbs total, on the second morning the tingling is almost gone again and my weight remains stable. Including a small attempt to lose weight before the attack, and some weight loss just after the asthma attack I've lost 22lbs now.
...Vitamin B12 is ok.
Here are my opinions: Your MCV (mean corpuscular volume) at 94 is at the high-end of your lab's range (80-97). This indicates that red blood cells are enlarged. The condition of enlarged red blood cells is called macrocytosis and is a sign of a possible B12 deficiency (or even Pernicious Anemia).
According to authors Pacholok and Stuart, your B12 level at 422 pg/mL is in the "gray zone." If your testing was done after taking vitamin B supplements, those B12 test results are unreliable. And any B12 supplement in the cyano form is not well absorbed by the body; methylcobalamin is the better choice.
Corticosteroids (like prednisolone) interfere with B12 and worsen a deficiency.
Your current concern is about weight loss; please note that weight loss is possibly a symptom of anemia due to a vitamin B12 deficiency.
"Everything You Want Your Doctor to Know about Vitamin B12"
I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).
Cardinal Signs of Anemia Due to Vitamin B12 Deficiency:
Fatigue
Shortness of breath
Dizziness
Pale/yellowish skin
Swollen tongue that may appear dark red Weight loss
Diarrhea Numbness or tingling in your hands and legs
Muscle weakness
Irritability
Unsteady movements
Mental confusion or forgetfulness
I suspect that you have a subtle vitamin B12 deficiency… That's my opinion.
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Mon Nov 03, 2014 9:44 am
by yirara
I'm going to bed in a moment, thus more tomorrow. Very briefly:
According to authors Pacholok and Stuart, your B12 level at 422 pg/mL is in the "gray zone." If your testing was done after taking vitamin B supplements, those B12 test results are unreliable. And any B12 supplement in the cyano form is not well absorbed by the body; methylcobalamin is the better choice.
Hmm.. what's the sense in having lab levels if they are so much different than the ones you quote?
Let me think.. the tingling started at the end of July. I got pills for around 10 days, during which I saw no changes. The tingling then changed to a more sport-induced one sometime at the end of August. Short time afterwards I stopped taking the inhalation corticosteroids, not the other way around. The blood test was last week. I was suspecting Vitamin B12 deficiency indeed because of the corticosteroids but my doctor told me the values are absolutely fine.
Your current concern is about weight loss; please note that weight loss is possibly a symptom of anemia due to a vitamin B12 deficiency.
Oh, I did not read that before. What might be the connection between exercise and tingling? Yes, there are episodes of somewhat stronger tingling (not sure if it really goes away completely) without sport, but there certainly is a connection with working out. And especially then I see the strong weight loss. Hmpf.. always wanted to have a few lbs less, but I didn't want to replace all my trousers with new ones two sizes smaller.
I do hope it's Vitamin D12, really! Is it possible to fill up on it again taking pills of a certain dosage or not, and does it interact with other vitamins or minerals? I mean, there's iron, vitamin D, magnesium, possible zinc.. you can't have a deficiency on everything, can you?
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Mon Nov 03, 2014 10:16 am
by jimmylegs
hi again
lab ranges are extremely problematic. even widely published and often used ranges have been challenged in research, the researchers having identified treatable deficiency within 'normal' ranges.
it takes a lot of work to know exactly how to interpret results, and doctors often fall far short on the training required in this department, especially where nutrients are concerned.
various kinds of nutrient problems can affect appetite and result in weight loss. low zinc is an issue that can affect both vitamin b12 and iron status. when low in all three, you could reasonably expect some undesirable synergistic effects.
i experienced my most dramatic and 'unexplained' weight loss when working full time at a physical outdoor rec job, and consuming a restricted but what i would at the time have called 'healthy' whole food diet. it wouldn't be long before the neurological symptoms became severe and i ended up with the msdx. in hindsight after years of testing and learning to properly interpret my results, i was low/deficient in iron, b12, zinc, magnesium and d3. i also had a matching low uric acid status (which corrected itself immediately upon addressing low zinc).
b12 is an unfortunately narrow but currently-very-popular-at-tims lens through which to view a very complex system ie the human body. the magic bullet concept is appealing, i know - i spent my first few months post dx (early 2006) fixated on B12 and blaming it for everything.
your body stores b12 in the liver. you should be able to 'top up', but it may not be a quick process. for dietary sources, veal liver is a particularly rich source you may want to consider. overall, as tempting as it can be to hone in on one nutrient, i would personally caution you against ignoring your more glaring issues related to iron and magnesium (and zinc, if the uric acid indication is on track).
there's been a fair amount of conversation here at tims specifically connected to athletic nutrient depletion. on the order of a dozen potentially related inquiries here just in 2014.
my friend and former co-worker had health problems and came to me. we wrote up a list of tests to request, and her doctor's office agreed to run the tests. her blood results were all low normal. we set up a diet and supplement plan for her, pushed all her levels to the upper end of the normal ranges at her labs, and all her various health concerns resolved. the docs said it was coincidence. she didn't care what they said because she was better.
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Tue Nov 04, 2014 5:28 am
by yirara
Thanks a lot Jimmylegs!
I'm currently reading up on the topic. I should probably get a metylmalonacid and holotranscobalami test done, but my doc thinks all necessary work is done and I'm fine. From what I read it seems that at least Vit B12 is relatively free of side effects and doesn't need additional food or the omission of certain food to be absorbed. Are there different qualities I should be looking at, like with magnesium? Btw, I'll also have a look if I find something else than Mg-oxide. And zinc *sigh* and then I'll see what happens. I found out today I won't get an earlier doctors appointment anyway: the other clinic will phone me with an appointment sometime next week, and then I'm on vacation for almost three weeks. Almost a bit scary. Been traveling quite a lot since the asthma attack but never been away for that long. Hopefully the tingling will be somewhat better until December, and if not.. well.. we'll see about it then.
edit: corrected typo in Vitamin B12
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Tue Nov 04, 2014 8:20 am
by jimmylegs
hello and you're welcome
i noticed you've typed D12 a couple of times now, but am certain you know it should be B12. just want to get that in place for any future readers less familiar with the subject matter.
with b12, what you want to look at is cofactors to optimize absorption/utilization. zinc is a factor there for example.
as for the most suitable forms, look for methylcobalamin. it is more bioavailable than longer shelf life forms such as cyanocobalamin.
you also want to watch your timing with larger intakes of b12, as it can affect your circadian rhythm and keep you awake at night. large amounts taken in the morning (eg 1000-2000mcg doses) can be expected to interfere with sleep patterns.
interesting aside (from wikipedia): "Hydroxocobalamin, a form (or vitamer) of vitamin B12 made by bacteria, and sometimes denoted vitamin B12a, is used to bind cyanide to form the harmless cyanocobalamin form of vitamin B12".
here is a possible source for magnesium BIS-glycinate, at least (i am not a fan, personally, but this form may be as close as you can get to magnesium glycinate in your location) http://www.biovea.com/
there are some pretty strong connections between asthma and magnesium, so this will be a great issue to take care of promptly. will help you make the best use of any vitamin D3 supplements as well.
you should also be able to get a decent zinc product, properly blended with copper, from biovea.
their offerings vary country to country but you should be able to get at least their 15mg zinc w/ 2mg copper. you could safely take two of those each day (NOT on an empty stomach, and for timing it would be best to take them one with breakfast and one with lunch).
hope that helps
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Wed Nov 05, 2014 5:26 am
by yirara
Great, thanks a lot!
It looks like I won't be able to order online as that website for some reason refuses all my credit cards, but at least I know what kind of products and ingredients to look out for. I'll check out a few pharmacies tomorrow. At least I should be able to get methylcobalamin in a similar dosage and hopefully a similar zinc mix.
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Wed Nov 05, 2014 6:23 am
by jimmylegs
that is weird! maybe you could contact the site admin folks at biovea, to see if there is a fixable problem with their e commerce?
in the meantime, hope you can find some reasonable substitutes. and it can never hurt to make sure your diet is up to par for these various nutrients we've been discussing. that whfoods resource i linked to above is really helpful in that dept.
happy hunting!
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Tue Nov 11, 2014 11:08 pm
by yirara
Well, no success yet with them, and all I can get in pharmacies here is rather inferior stuff. What I'm doing now is nothing as I'm off on a vacation from coming weekend. Afterwards I'm going to a doctor again (got a good recommendation). Until then I'm not taking any B12 supplements as I can't get them anyway at the moment and it would mess up the coming blood test. The tingling is better at least at the moment. I carefully did some workout yesterday (I miss it so much). Well.. carefully... it was a shortish HIIT workout. Gosh, how I missed that! No worsening apart from a blocked nose in the evening - which is also one of those things that pop up again and again. So right, I'm off for the coming three weeks.
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Wed Nov 12, 2014 7:54 am
by jimmylegs
that's too bad :S hopefully you can get in touch with biovea and perhaps get online ordering to work. i'm sure they don't want to be losing potential customers to some technical glitch. also, maybe you can get a local shop to order the right stuff for you. maybe a shop can successfully purchase from the biovea site? just thinking out loud
you may know that mcv can be elevated in conjunction with low folic acid status, not just low b12. you might want to consider also having a closer look at food folate as a possible explanation for that higher end mcv.
in your results you show an erythrocyte folate level of 14.3 with no units or range provided. you might do very well to at least find out the units for that, since ranges can be located in research.
for starters, apparently RBCs = erythrocytes (mature) + reticulocytes (immature)
table 1 examines cutoffs when using macrocytic anemia (MCV) as the indicator. the chart indicates that RBC folate is deficient below 100 ng/ml or 226.5 nmol/L. table 2 looks at cutoffs for folate deficiency when using homocysteine (Hcy) as the indicator. in this case RBC folate is deficient at higher levels, ie below 151 ng/ml or 340 nmol/L. so on the face of it, it looks like your folate of 14.3 is extremely low either way (i can't come up with a reasonable match so far by just playing with easy units conversions). could be a good idea to check with the lab re what those units actually are.
so we know you have low mag, so so b12, and question mark / possibly super low folate. let's say b12 is the reason for the higher end mcv. with concurrent low magnesium that implies a diet low in mag/b12 foods ie seafood and red meat. if folate is the issue, with concurrent low mag we could suspect a diet low in legumes and leafy green veg.
i'll be interested to hear if you can find out more details on those folate units
Re: MS? other autoimmune problem? Sport-induced partly
Posted: Wed Nov 12, 2014 3:30 pm
by NHE
jimmylegs wrote:table 1 examines cutoffs when using macrocytic anemia (MCV) as the indicator. the chart indicates that RBC folate is deficient below 100 ng/ml or 226.5 nmol/L. table 2 looks at cutoffs for folate deficiency when using homocysteine (Hcy) as the indicator. in this case RBC folate is deficient at higher levels, ie below 151 ng/ml or 340 nmol/L. so on the face of it, it looks like your folate of 14.3 is extremely low either way (i can't come up with a reasonable match so far by just playing with easy units conversions). could be a good idea to check with the lab re what those units actually are.
LabCorp uses a range of 499-1504 ng/mL for RBC folate.
My test results last Spring came in at 403 ng/mL and were noted as deficient.
With a number like 14.3, it leads one to suspect that they might be using different units or there was a mix-up on what test was run. If it is indeed really RBC folate in units of ng/mL, then get yourself to a hematologist or other doctor that understands the methylation cycle. However, I suspect that they really tested serum folate and just put the wrong test down in the results. This hypothesis needs to be verified though.