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My wife, 33 yo, has been occasionally feeling tingling and pins & needles in her both arm and feet for few days and since her cousin has already been diagnosed with MS, we visited our GP asking for MRI and Blood test (though the GP was insisting that it is stress related as she has recently been flat out at work). She has no other symptoms such as fatigue, sexual dysfunction, bowl issues or weakness.
We have the MRI and blood test results back; radiologist conclusion reads as:
'Multiple foci of T2 and FLAIR signal hyperintensity. There are multiple potential causes for these including demyelination and vasculitis (both frontal and parietal lobes). Small vessel ischaemia is possible, but thought less likely in this age group. Review by a neurologist and consideration for imaging of the remainder of the neural axis is suggested.'
Blood test are normal with the following exceptions (B12 and Iron Deficiency):
Iron : 20 umol/L
Tranferrin : 2.5 g/l
Tranferrin Saturation: 32%
Ferritin : 15 & ug/L (30-200) Ferritin level of less than 30 ug/L indicates depleted iron stores.
Our GP have referred us to neurologist (next week appointment) and also prescribed B12 injection (Neo-cytamen, 2 repeats) and iron supplement (Ferrograd 325mg, 30 x 2 repeats).
Now my questions :
1. Seems that it some cases B12 deficiency symptoms are confused with MS? Given the above, I would like to know your opinion on my wife's case.
2. Given that we are visiting neurologist next week, do you think she should take the B12 injections and Iron supplements now as it may interfere with the diagnosis?
We are both so stressed and your feedback would mean a lot to us .
It is really too early to think about MS. Get tested for Vitamin D3 (25 OH).
Most likely symptoms will improve with increased B12 levels and she will feel more energetic because of improved iron.
Say no to stress, have fun ;)
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i am feeling red flags here re potential irreversible damage without prompt and sustained action. this input comes from my personal experience and an ensuing decade of figuring out what i had been doing to get myself into such a state.
consider: high quality natural source multivitamin and multimineral right away, plus essential fatty acids. if you can find a product that requires use 3x per day you'll have a better shot at sustained delivery than via the typical one a day.
also consider: in addition to the above for the short term, daily b50complex (b12 doesn't occur in isolation in nature). if possible, find one containing a bioavailable form of b12 (eg methylcobalamin)
i just ran a search and found this possibility (i have not tried personally) http://www.integratedhealth.com/hpdspec/bcom.html
b12 injections are unnecessary. if you want to bypass the digestive tract, sublingual b12 strips are available. i used to use them but personally i wouldn't bother with b12 on its own now.
if that doesn't clear things up consider looking at pernicious anemia - but my feeling is that she would have known about it much earlier if that were the real problem.
in my own case, i originally didn't understand that i was doing irreversible damage when my hands and feet were going numb and tingly, for a long time i could reverse the numbness and weakness with b12 alone. then the day came that it no longer worked. and *then* the day came, before i really started ramping things up nutritionally, that things got worse. i managed to get some functionality back but i have permanently numb hands and feet now. at least i can type again - that was gone for awhile except for jabbing at one key at a time.
is there an obvious lifestyle reason for low iron and b12? when i had these issues i was a long term vegan and didn't know a fraction of what i should have about nutrition. mainstream medicine didn't have what it took to supervise my well being. one of the main things that this whole experience taught me was that my health is my personal responsibility and not my doctor's. b12 and iron were the tip of the iceberg!
re the question about the neuro visit. iron supplements won't affect dx but they could cause other problems that may not yet be on the radar. that's partially why i emphasized high quality multis.
b12 supplements (again, not in isolation) are probably only going to be helpful. the existing level isn't really low enough for the docs to say oh this is definitely a b12 thing not an ms thing. docs won't likely flag this to your attn but the serum cobalamin level should ideally be at least 370 (and i like to aim for 500 to be on the safe side).
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Manso wrote:My wife, 33 yo, has been occasionally feeling tingling and pins & needles in her both arm and feet for few days and since her cousin has already been diagnosed with MS, we visited our GP asking for MRI and Blood test (though the GP was insisting that it is stress related as she has recently been flat out at work). She has no other symptoms such as fatigue, sexual dysfunction, bowl issues or weakness.
We have the MRI and blood test results back; radiologist conclusion reads as:
'Multiple foci of T2 and FLAIR signal hyperintensity. There are multiple potential causes for these including demyelination and vasculitis (both frontal and parietal lobes). Small vessel ischaemia is possible, but thought less likely in this age group. Review by a neurologist and consideration for imaging of the remainder of the neural axis is suggested.'
Blood test are normal with the following exceptions (B12 and Iron Deficiency):
Iron : 20 umol/L
Tranferrin : 2.5 g/l
Tranferrin Saturation: 32%
Ferritin : 15 & ug/L (30-200) Ferritin level of less than 30 ug/L indicates depleted iron stores.
Our GP have referred us to neurologist (next week appointment) and also prescribed B12 injection (Neo-cytamen, 2 repeats) and iron supplement (Ferrograd 325mg, 30 x 2 repeats).
Now my questions :
1. Seems that it some cases B12 deficiency symptoms are confused with MS? Given the above, I would like to know your opinion on my wife's case.
2. Given that we are visiting neurologist next week, do you think she should take the B12 injections and Iron supplements now as it may interfere with the diagnosis?
We are both so stressed and your feedback would mean a lot to us .
Thanks,
Manso
Greetings Manso. Welcome to ThisIsMS. I apologize for the delayed reply. A serum B12 value of 213 pmol/L translates to 288.6 pg/mL. While this value is within most laboratory ranges for "normal," it's certainly not ideal. It puts an individual into a grey area of B12 diagnosis where other parameters, such as symptoms, must be taken into consideration. Sally Pacholok writes in the book 'Could It Be B12? An epidemic of misdiagnoses' that the central nervous system can be deficient in B12 when serum values fall below 500 pg/mL. She recommends for anyone with neurological symptoms to keep serum B12 between 500-1000 pg/mL (370-738 pmol/L).
Regarding the proposed B12 shots, Neo-cytamen is hydroxocobalamin which is a good form to use for shots. However, if I understand correctly, your wife's doctor proposes just two shots. This is usually not enough for a typical B12 replacement regimen. A more typical protocol usually consists of a daily B12 shot for one week followed by weekly shots for several months to life depending on why one is B12 deficient. In addition, you can use a sublingual tablet with both active forms of B12. The following one from Superior Source contains 1000 µg methylcobalamin and 1000 µg adenosylcobalamin. https://www.luckyvitamin.com/p-429934-s ... 0-tablet-s Alternatively, since B12 and methylfolate work together, you can use a combined methylcobalamin and methylfolate supplement such as this one https://www.vitacost.com/superior-sourc ... thylfolate. I recommend daily use of the sublingual tablets once you begin weekly shots of the hydroxocobalamin.
Still, as Jimmylegs suggests, it's important to know why your wife might be B12 deficient. In my case, I consumed large daily quantities of green tea for 11-12 years. This drove methylfolate down by inhibiting dihydrofolate reductase (one of the first enzymes in the pathway for processing dietary folate). Since methylfolate was low, it wasn't available to recycle spent B12 back to the active methylcobalamin form causing a B12 deficiency. The B12 deficiency led to a 12 cm demyelinated scar on my cervical spinal cord consistent with subacute combined degeneration. In essence, I slid downhill for a long time and then went over the edge of the cliff. After 21/2 years, I'm still not back to the state where I was before I hit the cliff. That said, it's important to correct a B12 deficiency early before neurological symptoms become permanent.
Given that we are visiting neurologist next week, do you think she should take the B12 injections and Iron supplements now as it may interfere with the diagnosis?
I would treat the B12 deficiency before considering other diagnoses. A neurologist would likely do a physical exam to try to confirm the B12 deficiency. This will probably include a tuning fork test of vibration sensitivity in the legs. Was this already done? It might not be necessary at this point. Did your wife have any other blood tests done? Red blood cell (RBC) folate, homocysteine and methylmalonic acid (MMA) are also commonly tested in cases of suspected B12 deficiency. You might consider asking her GP for a referral to a hematologist to try to isolate the cause of the B12 deficiency.
jimmylegs wrote:i am feeling red flags here re potential irreversible damage without prompt and sustained action. this input comes from my personal experience and an ensuing decade of figuring out what i had been doing to get myself into such a state.
consider: high quality natural source multivitamin and multimineral right away, plus essential fatty acids. if you can find a product that requires use 3x per day you'll have a better shot at sustained delivery than via the typical one a day.
also consider: in addition to the above for the short term, daily b50complex (b12 doesn't occur in isolation in nature). if possible, find one containing a bioavailable form of b12 (eg methylcobalamin)
i just ran a search and found this possibility (i have not tried personally) http://www.integratedhealth.com/hpdspec/bcom.html
b12 injections are unnecessary. if you want to bypass the digestive tract, sublingual b12 strips are available. i used to use them but personally i wouldn't bother with b12 on its own now.
if that doesn't clear things up consider looking at pernicious anemia - but my feeling is that she would have known about it much earlier if that were the real problem.
in my own case, i originally didn't understand that i was doing irreversible damage when my hands and feet were going numb and tingly, for a long time i could reverse the numbness and weakness with b12 alone. then the day came that it no longer worked. and *then* the day came, before i really started ramping things up nutritionally, that things got worse. i managed to get some functionality back but i have permanently numb hands and feet now. at least i can type again - that was gone for awhile except for jabbing at one key at a time.
is there an obvious lifestyle reason for low iron and b12? when i had these issues i was a long term vegan and didn't know a fraction of what i should have about nutrition. mainstream medicine didn't have what it took to supervise my well being. one of the main things that this whole experience taught me was that my health is my personal responsibility and not my doctor's. b12 and iron were the tip of the iceberg!
re the question about the neuro visit. iron supplements won't affect dx but they could cause other problems that may not yet be on the radar. that's partially why i emphasized high quality multis.
b12 supplements (again, not in isolation) are probably only going to be helpful. the existing level isn't really low enough for the docs to say oh this is definitely a b12 thing not an ms thing. docs won't likely flag this to your attn but the serum cobalamin level should ideally be at least 370 (and i like to aim for 500 to be on the safe side).
Thanks Jimmy; I did a bit of research and finally ordered a box of 'Superior Source - No Shot B12 Methylcobalamin 10000 mcg. with B6 & Folic Acid 1200 mcg. - 30 Tablets' from US (link below); I live in Perth, Australia so it would take a week to get here from US.
What other vitamins do you think we should get to supplement the above? I guess fatty acids and b50 complex?
No a real life-style reason, she had stopped eating meat around 2 months ago but I guess it is too early to show-up as B12 deficiency. As you said, her actual B12 level is not too low (213 pmol/L) but her active B12 (holo-transcobalamin) is mildly below the range (24 pmol/L); not sure what the difference it makes but seems it can be a sign of B12 deficiency.
Other things we just came to know is that 2 of her aunts have anemia, so it might be her case as well.
Anyhow, too many unknowns for the time being; i guess things would clear-up better in the next few weeks. I am thinking we should visit a hematologist too (along with the neurologist). Seems too soon to focus on MS and roll-out other possible issues.
One last thing that concerns me is that her symptoms (hand/feet tinglings) kind of come and go over the day; but I have read that the ones with anemia/B12 deficiency issues are more permanent and stay over time. She is yet at very early stages (just a week for symptoms for the first time), so it may become more permanent as time passes? Any thoughts?
Manso wrote:My wife, 33 yo, has been occasionally feeling tingling and pins & needles in her both arm and feet for few days and since her cousin has already been diagnosed with MS, we visited our GP asking for MRI and Blood test (though the GP was insisting that it is stress related as she has recently been flat out at work). She has no other symptoms such as fatigue, sexual dysfunction, bowl issues or weakness.
We have the MRI and blood test results back; radiologist conclusion reads as:
'Multiple foci of T2 and FLAIR signal hyperintensity. There are multiple potential causes for these including demyelination and vasculitis (both frontal and parietal lobes). Small vessel ischaemia is possible, but thought less likely in this age group. Review by a neurologist and consideration for imaging of the remainder of the neural axis is suggested.'
Blood test are normal with the following exceptions (B12 and Iron Deficiency):
Iron : 20 umol/L
Tranferrin : 2.5 g/l
Tranferrin Saturation: 32%
Ferritin : 15 & ug/L (30-200) Ferritin level of less than 30 ug/L indicates depleted iron stores.
Our GP have referred us to neurologist (next week appointment) and also prescribed B12 injection (Neo-cytamen, 2 repeats) and iron supplement (Ferrograd 325mg, 30 x 2 repeats).
Now my questions :
1. Seems that it some cases B12 deficiency symptoms are confused with MS? Given the above, I would like to know your opinion on my wife's case.
2. Given that we are visiting neurologist next week, do you think she should take the B12 injections and Iron supplements now as it may interfere with the diagnosis?
We are both so stressed and your feedback would mean a lot to us .
Thanks,
Manso
Greetings Manso. Welcome to ThisIsMS. I apologize for the delayed reply. A serum B12 value of 213 pmol/L translates to 288.6 pg/mL. While this value is within most laboratory ranges for "normal," it's certainly not ideal. It puts an individual into a grey area of B12 diagnosis where other parameters, such as symptoms, must be taken into consideration. Sally Pacholok writes in the book 'Could It Be B12? An epidemic of misdiagnoses' that the central nervous system can be deficient in B12 when serum values fall below 500 pg/mL. She recommends for anyone with neurological symptoms to keep serum B12 between 500-1000 pg/mL (370-738 pmol/L).
Regarding the proposed B12 shots, Neo-cytamen is hydroxocobalamin which is a good form to use for shots. However, if I understand correctly, your wife's doctor proposes just two shots. This is usually not enough for a typical B12 replacement regimen. A more typical protocol usually consists of a daily B12 shot for one week followed by weekly shots for several months to life depending on why one is B12 deficient. In addition, you can use a sublingual tablet with both active forms of B12. The following one from Superior Source contains 1000 µg methylcobalamin and 1000 µg adenosylcobalamin. https://www.luckyvitamin.com/p-429934-s ... 0-tablet-s Alternatively, since B12 and methylfolate work together, you can use a combined methylcobalamin and methylfolate supplement such as this one https://www.vitacost.com/superior-sourc ... thylfolate. I recommend daily use of the sublingual tablets once you begin weekly shots of the hydroxocobalamin.
Still, as Jimmylegs suggests, it's important to know why your wife might be B12 deficient. In my case, I consumed large daily quantities of green tea for 11-12 years. This drove methylfolate down by inhibiting dihydrofolate reductase (one of the first enzymes in the pathway for processing dietary folate). Since methylfolate was low, it wasn't available to recycle spent B12 back to the active methylcobalamin form causing a B12 deficiency. The B12 deficiency led to a 12 cm demyelinated scar on my cervical spinal cord consistent with subacute combined degeneration. In essence, I slid downhill for a long time and then went over the edge of the cliff. After 21/2 years, I'm still not back to the state where I was before I hit the cliff. That said, it's important to correct a B12 deficiency early before neurological symptoms become permanent.
Given that we are visiting neurologist next week, do you think she should take the B12 injections and Iron supplements now as it may interfere with the diagnosis?
I would treat the B12 deficiency before considering other diagnoses. A neurologist would likely do a physical exam to try to confirm the B12 deficiency. This will probably include a tuning fork test of vibration sensitivity in the legs. Was this already done? It might not be necessary at this point. Did your wife have any other blood tests done? Red blood cell (RBC) folate, homocysteine and methylmalonic acid (MMA) are also commonly tested in cases of suspected B12 deficiency. You might consider asking her GP for a referral to a hematologist to try to isolate the cause of the B12 deficiency.
G'Day NHE and thanks for getting back to me. Yes her B-12 level is within the grey area but the factor that shows mild B-12 deficiency (according to her pathologist) is her active-B12 (holotranscobalamin) levle - being 24 pmol/L. I struggle to understand the difference between the two (B12 vs active-B12), any thoughts on that?
We are going to get the B12 injections and then follow-up with Methylcobalamin 10000 mcg. with B6 & Folic Acid 1200 mcg tablest as you suggested and hope that things improve over time. Any time-frame that we should be seeing the changes in her symptom, showing that the supplements are starting to work?
My wife is not vegetarian, neither she has any specific life-style habit that can result in B-12 deficiency but her family have anemia background so she might be having the same issue (though her hemoglobin count is within the normal range - at the lower end). Her first symptoms just started a week ago so hopefully it is no too late for her to boost-up her vitamin level back to normal.
We are yet to see the neurologist next week, will keep you posted on the test he carries out on the day and those he would ask us to do. I am going to ask him to get us a comprehensive blood test and have it checked by a hematologist. It might be anemia not MS.
My main concerns are the white matter lesions in her MRI. Also her symptoms (hand/feet tinglings) kind of come and go over the day; but I have read that the ones with anemia/B12 deficiency issues are more permanent and stay over time. She is yet at very early stages (just a week for symptoms for the first time), so it may become more permanent as time passes? Any thoughts?
Anyhow, too many unknowns yet, things would hopefully clear-up better in coming weeks. We're keeping our fingers crossed...
Manso wrote:G'Day NHE and thanks for getting back to me. Yes her B-12 level is within the grey area but the factor that shows mild B-12 deficiency (according to her pathologist) is her active-B12 (holotranscobalamin) level - being 24 pmol/L. I struggle to understand the difference between the two (B12 vs active-B12), any thoughts on that?
Transcobalamin is a B12 transport protein that's also known as R factor. Holotranscobalamin is transcobalamin bound to B12. This is the active B12 ready to be taken up into cells. If memory serves me correctly, only about 20% of serum B12 is active as holotranscobalamin.
Cobalamin is bound to two proteins, transcobalamin (TC) and haptocorrin (HC). The TC-vitamin B12 complex is called holotranscobalamin (holoTC) containing the biologically active cobalamin, which promotes the uptake of its cobalamin by all cells, via specific receptors. The much larger fraction (about 80%) of cobalamin carried by HC is considered to be metabolically inert because no cellular receptors exist, except on the liver. 2,3 Genetic absence of HC, although rare, is not a serious condition. On the other hand, genetic absence or abnormalities of TC are manifested as typical haematological, neurological and metabolic manifestations of cobalamin deficiency requiring treatment even though serum analysis may show normal cobalamin concentrations. 4 The shorter half life for holoTC compared to holoHC makes a decrease in holoTC as one of the earliest markers of cobalamin deficiency. 5
Measurement of total vitamin B12 suffers from some limitations, in particular, most of the cobalamin measured is that bound to HC. 6,7 A number of studies have been published to support that holoTC would be a better indicator of vitamin B12 status than total vitamin B12. 8,9 New methods based on specific anti-TC antibodies are available and confirm the usefulness of holoTC measurement for diagnosing vitamin B12 deficiency. 10,11 As expected, holoTC levels are low in patients with biochemical signs of vitamin B12 deficiency. 12
Manso wrote:We are going to get the B12 injections and then follow-up with Methylcobalamin 10000 mcg. with B6 & Folic Acid 1200 mcg tablets as you suggested and hope that things improve over time.
Actually, I recommended the sublingual tablets with methylfolate. Folic acid is an inexpensive synthetic version of folate that has some physiological drawbacks. Consider getting https://www.vitacost.com/superior-sourc ... thylfolate on your next order.
See... Folate Metabolism and MTHFR: An Introduction
You may also want to supplement with adenosylcobalamin in addition to methylcobalamin. Adenosylcobalamin is the form of B12 that's stored in the liver. Note that adenosylcobalamin is also known as dibencozide in many supplements.
Manso wrote:Any time-frame that we should be seeing the changes in her symptom, showing that the supplements are starting to work?
She'll likely notice an energy boost with the first dose. I've experienced a sensation like the fog burning off in my brain when taking B12 when I was deficient. As such, take B12 early in the day as it can interfere with your sleep.
Manso wrote:My wife is not vegetarian, neither she has any specific life-style habit that can result in B-12 deficiency but her family have anemia background so she might be having the same issue (though her hemoglobin count is within the normal range - at the lower end). Her first symptoms just started a week ago so hopefully it is no too late for her to boost-up her vitamin level back to normal.
We are yet to see the neurologist next week, will keep you posted on the test he carries out on the day and those he would ask us to do. I am going to ask him to get us a comprehensive blood test and have it checked by a hematologist. It might be anemia not MS.
My main concerns are the white matter lesions in her MRI. Also her symptoms (hand/feet tinglings) kind of come and go over the day; but I have read that the ones with anemia/B12 deficiency issues are more permanent and stay over time. She is yet at very early stages (just a week for symptoms for the first time), so it may become more permanent as time passes? Any thoughts?
Do you have the MCV data from her Complete Blood Count (CBC) test? MCV is the mean corpuscular volume which is a measurement of the average size of a single red blood cell in femto liters (fL). MCV can be elevated in B12 deficiency although it's only usually over the top end of the "normal" range in severe cases of B12 deficiency.
Here are some additional resources...
Must watch: "Everything You Want Your Doctor to Know about Vitamin B12"
Read the following topic which has many good references.
Manso wrote:G'Day NHE and thanks for getting back to me. Yes her B-12 level is within the grey area but the factor that shows mild B-12 deficiency (according to her pathologist) is her active-B12 (holotranscobalamin) level - being 24 pmol/L. I struggle to understand the difference between the two (B12 vs active-B12), any thoughts on that?
Transcobalamin is a B12 transport protein that's also known as R factor. Holotranscobalamin is transcobalamin bound to B12. This is the active B12 ready to be taken up into cells. If memory serves me correctly, only about 20% of serum B12 is active as holotranscobalamin.
No single parameter can be used to diagnose cobalamin deficiency. Total serum cobalamin is neither sensitive nor it is specific for cobalamin deficiency. This might explain why many deficient subjects would be overlooked by utilizing total cobalamin as status marker. Concentration of holotranscobalamin (holoTC) in serum is an earlier marker that becomes decreased before total serum cobalamin.
i'm not a diagnostician by any stretch but has anyone ruled out thalassemia?
fatty acids yes. always best obtained via diet. on that note, there may be lifestyle issues of which she's unaware. the decision to omit meat red flags diet as a potential problem area. a visit to a dietitian could help clear up anything in that department. a detailed diet diary would be a useful thing to take along to that appointment.
you can overdose on b6 so i can't comment on adding to a regimen that already contains b6 but has no info on the amount.
i've personally overdosed on folic acid as well. technically it was a normal dose but i must have been missing some cofactor at the time because levels went sky high and i had a weird itching side effect.
i don't recall the highest daily dose of b12 i've ever been on but i do recall having 2000 mcg strips and having them. i don't know of any advantage to 10K mcg per day. insomnia is a possible side effect. i'd be wondering if a cofactor was affecting proper absorption and utilization of b12.
in general i've learned the hard way to distrust megadoses of single nutrients. cofactors are key when it comes to proper absorption and utilization. when choosing a multi vitmin, consider one for active people even if she isn't particularly athletic.
i'd said above that in early days symptoms of b12 deficiency were reversible with b12. and if it wasn't clear, it eventually not working any more was in context of a generally worsening dietary scenario that was depleting a variety of essential nutrients. when i had my best recovery, it was on a multinutrient therapy. at the time i ignored most of the mineral advice contained in that protocol. perhaps if i'd paid attention my recovery would have been even better, but it's too late now!
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