Not sure what to believe

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Not sure what to believe

Postby sadieceline » Sat Jun 07, 2014 5:51 pm

I am hoping to find some answers or even just some clarity.

A little background. When I was little (11), my GP brought up the possibility of MS due to short office test she did because of the numbness/tingling in my hands and feet. Nothing was every brought up again but the numbness/tingling went on/off until today. I'm 35. A few month after my first son (I was 27), it started getting worse. I set up an appt with a neuro but had to cancel because we ended up moving across the country. Fast forward to this February. Out of nowhere, both my arms went numb as well as my face and my arms were weak. I was fearful of a stroke but continued to talk and move to make sure I could. This continued for 6 days. I researched the heck out of it and the "normal" stuff that I felt seemed to all fit.

double vision, lack of concentration, loss of memory, loss of balance, numness, tingling, weakness, sexual dysfunction, extreme tiredness, slurred speech, loss of words, losing words mid sentence, lightheaded, painful eyes, shaking hands (not all the time)

I got on the phone with a neuro and got in ASAP. Brain and neck MRIs were done. Neck MRI was clean, brain MRI said a few lesions in the frontal and parietal regions but that they weren't consistant with MS. This neuro said that it wasn't MS and told me to go back to my GP.

So I found a new neuro. He said with the 2 MRIs and my history/ symptoms he does not think it is MS. He ordered a bunch of blood tests and it came back that my B12 was low, 243. I know B12 deficiency can mimic MS. I have now had 4 B12 shots and other than some extra energy for a few days, not much has changed. I don't see him for another 3 months so I am here.

I am sorry if that got long. I just wanted to be thorough. I guess I was hoping to have some light shed on if there is still the possibility of having MS even though the neuro says no? Since I started the shots the numbness/tingling in my hands and feet have gone from an almost asleep type feeling to a hard, jabbing pins, tingling, hurting, painfulness. Again, I know this is a MS board, but there may be some experience in B12- shouldn't things be getting better and not staying the same or getting worse?

I also have a vitamin D deficiency. When it was testing in January in was >15 (the lab doesn't give specific numbers below 15. I was on 8,000 iu D3 and 8 weeks later it was 16.9. I have been on 12,000 iu since and have not been back to be retested.

Thank you for taking the time to read this and I hope someone can help me with and insight, with this, MS, or B12. Thanks
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Re: Not sure what to believe

Postby jimmylegs » Sat Jun 07, 2014 6:22 pm

hi there and welcome :) d3 and b12 are a good start. i was wondering what units your results were in? nmol/L and pmol/L? or something else?

also, curious if the docs have run a serum ferritin test to check your iron status at all?

other important essential nutrients which are low normal in ms patients and are smart to rule out include serum zinc and serum magnesium. there are a few more.. but zinc and magnesium are pretty fundamental minerals supporting thousands of interactions throughout your body, including the ability to absorb and retain b12 and d3 so, may as well make those supplements and shots count! :)

if additional testing is not feasible, what about lifestyle? does it make sense to you, that your d3 and b12 levels are down? how is your diet, generally?

more reading on the nutrition side, if you're interested :)
regimens-f22/topic2489.html
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Re: Not sure what to believe

Postby sadieceline » Sat Jun 07, 2014 7:26 pm

I moved my paperwork after my neuro visit and can't find it. It had all the results from my previous tests, not the new neuro. My neuro did test for B12, lupus, lyme, rhymatoid (sp?) factor, and an unrelated possible clotting disorder among others. I have had blood work done for the last 5 years, requested by my psychiatrist. Not really sure why, though. It has included my iron, but have not heard the word ferritin. I will ask her when I see her next. It was the basics, I believe. This last time she included my prolactin levels. I had questions about the 2 values for my thyroid so I went to my GP and he ran more for it and it came back fine, but again, not sure of the numbers- they are on the papers I can't find! Grrr. the vitamin D was actually 16.5 mg/mL (I found that one). If I find them I will update or when I get a copy from my shrink in a few weeks. I really never checked what I was checked for. I know my LDL was borderline. nothing to concerning.

I have hit my deductible so additional testing IS feasible. I'm making this year worth it! I will also have another MRI the beginning of December.

I am always going but don't really have an exercise routine. I have a toddler that I am always chasing and 2 grade school boys. I have a house and yard I have to keep up with and extra activities with the kids and a husband who travels often for work. My diet is basically meat, eggs, cheese, veggies, and water with a coffee IV in the morning. I am obese. My diet and obesity have me confused as to how I could be B12 deficient. From what I understand, both would cause high levels. I stay away from pop, junk food, HFCS, try to stay away from dyes. I learned the hard way the effects and don't want that stuff by my kids. Lead by example, right?

I am not sure if I was vit D deficient bc I stayed inside for the winter. I don't know if that would do it. I would go out when needed to run errands but wouldn't stay out there. I am not outside 3-4 times a day, but mostly in the shade. I do make sure I am in the sun at least 15-20 minutes a few times a week without sunscreen to absorb as much D as I can. I don't know if that would have any effect on my blood levels and not sure if it would even be worth while to get it checked again bc of it.

I do also get 3-4 normal headaches a week and about 1 migraine each week and am bi polar. I have suffered from depression for as long as I can remember and was officially DX when I was 18. Not sure if any of this goes with anything else.
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Re: Not sure what to believe

Postby jimmylegs » Sun Jun 08, 2014 2:35 am

hi, that extra info really does help :)
i'll be interested to see bloodwork info whenever you can get it!

good to hear that testing is an option - really helps :D

re being obese and having questions about thyroid numbers, can you elaborate which tests and results you had questions about?

with b12, it's possible you're missing a critical cofactor, or maybe just not choosing the best dietary options... do you ever eat salmon? it has 4x more b12 than a serving of beef. otherwise if your daily intake is high and levels are low, i wonder if any other tests have been done in addition to serum cobalamin? for example when i was diagnosed in 06, the hospital ran serum b12, as well as a parietal cell antibody test to make sure i would be producing intrinsic factor for b12 absorption.

three munchkins, cute :) re diet, what different kinds of meat products do you eat each week? how many eggs per week, roughly? approximately how much cheese daily? lol coffee iv - nice :D can i inquire about your dietary habits related to wheat products? phytate? sugar? dairy other than cheese?

d3 deficiency can be from low sunlight exposure but also can be aggravated by low magnesium intake, even if you do get some sun without sunscreen. lots of coffee would probably contribute to low magnesium. do you find you need the coffee to keep your energy levels up? a serum magnesium check wouldn't hurt, whenever you have your next d3 test.

i'd expect headaches and migraine to be linked to low mag as well. also, a friend of mine who was my roommate for a year also has a bipolar dx. among other things magnesium, b vitamins, and fish oils were important for her. magnesium, zinc, and omega 3s (fish oil) would probably help out with depression as well.

sometimes meds can affect essential nutrient status. maybe that's part of the reason why your psychiatrist has been monitoring bloodwork. if you can find or get a copy of your files, it would be good to know what levels the good dr is keeping an eye on.

i'll keep an eye open for updates :) have a great day!
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Re: Not sure what to believe

Postby lyndacarol » Sun Jun 08, 2014 9:53 am

sadieceline wrote:I am hoping to find some answers or even just some clarity.

A little background. When I was little (11), my GP brought up the possibility of MS due to short office test she did because of the numbness/tingling in my hands and feet. Nothing was every brought up again but the numbness/tingling went on/off until today. I'm 35. A few month after my first son (I was 27), it started getting worse. I set up an appt with a neuro but had to cancel because we ended up moving across the country. Fast forward to this February. Out of nowhere, both my arms went numb as well as my face and my arms were weak. I was fearful of a stroke but continued to talk and move to make sure I could. This continued for 6 days. I researched the heck out of it and the "normal" stuff that I felt seemed to all fit.

double vision, lack of concentration, loss of memory, loss of balance, numness, tingling, weakness, sexual dysfunction, extreme tiredness, slurred speech, loss of words, losing words mid sentence, lightheaded, painful eyes, shaking hands (not all the time)

I got on the phone with a neuro and got in ASAP. Brain and neck MRIs were done. Neck MRI was clean, brain MRI said a few lesions in the frontal and parietal regions but that they weren't consistant with MS. This neuro said that it wasn't MS and told me to go back to my GP.

So I found a new neuro. He said with the 2 MRIs and my history/ symptoms he does not think it is MS. He ordered a bunch of blood tests and it came back that my B12 was low, 243. I know B12 deficiency can mimic MS. I have now had 4 B12 shots and other than some extra energy for a few days, not much has changed. I don't see him for another 3 months so I am here.

I am sorry if that got long. I just wanted to be thorough. I guess I was hoping to have some light shed on if there is still the possibility of having MS even though the neuro says no? Since I started the shots the numbness/tingling in my hands and feet have gone from an almost asleep type feeling to a hard, jabbing pins, tingling, hurting, painfulness. Again, I know this is a MS board, but there may be some experience in B12- shouldn't things be getting better and not staying the same or getting worse?

I also have a vitamin D deficiency. When it was testing in January in was >15 (the lab doesn't give specific numbers below 15. I was on 8,000 iu D3 and 8 weeks later it was 16.9. I have been on 12,000 iu since and have not been back to be retested.

Thank you for taking the time to read this and I hope someone can help me with and insight, with this, MS, or B12. Thanks

Welcome to ThisIsMS, sadieceline

I'm glad to hear the doctors began your investigation with vitamin B12 testing, just as the University of Chicago recommends:

http://peripheralneuropathycenter.uchic ... #bloodtest

Your B12 test result of 243 pg/mL is low; in the US cyanocobalamin (a.k.a. cyano B12) is used by doctors for B12 injections, but methylcobalamin is MUCH more effective – ask if your doctor would write a prescription for methyl B12 and small gauge needles/syringes that diabetics use. Just as diabetics self-administer insulin subcutaneously, I'm sure you could self-administer B12 subcutaneously. I expect you would see more symptom improvement with methylcobalamin.

I highly recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN & her husband Jeffrey J. 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):

"Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

@1:23 "The neurological manifestations well precede the hematological manifestations."

Many of your symptoms can be found on this list from the video:

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue (your "extreme tiredness")
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment (your "lack of concentration, loss of memory, loss of words")
Visual Disturbances ("double vision")
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

A vitamin B 12 deficiency can develop at any time in a person's life. If there is a deficiency in the blood, it can be due to diet or absorption problems; but there can also be a functional deficiency in the cells/tissue due to other problems (transport, metabolism) in the complex B12 pathway. A B12 deficiency is linked to bipolar disorder.

To eliminate B12 as a possibility, your doctor will need to run a full panel of tests. These include...
• serum B12
• RBC folate
• urinary methylmalonic acid (uMMA)
• fasting serum homocysteine
• unsaturated B12 binding capacityhours.
The tests should be run after not taking either B12 or folate supplements for at least 72 hours.

Thorough B12 investigation the logical place to start, in my opinion.
Last edited by lyndacarol on Sun Jun 08, 2014 4:57 pm, edited 1 time in total.
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Re: Not sure what to believe

Postby NHE » Sun Jun 08, 2014 4:49 pm

lyndacarol wrote:Your B12 test result of 243 pg/mL is low; in the US cyanocobalamin (a.k.a. cyano B12) is used by doctors for B12 injections, but methylcobalamin is MUCH more effective – ask if your doctor would write a prescription for methyl B12 and small gauge needles/syringes that diabetics use. Just as diabetics self-administer insulin subcutaneously, I'm sure you could self-administer B12 subcutaneously. I expect you would see more symptom improvement with methylcobalamin.


Another injectable form is hydroxocobalamin. It has greater efficacy than cyanocobalamin, but not as good as methylcobalamin. However, methylcobalamin is available as sublingual tablets. I've seen them ranging in dosage from 500 µg to 10,000 µg. Note, methylcobalamin for injection may be available from compounding pharmacies.
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Re: Not sure what to believe

Postby sadieceline » Sun Jun 08, 2014 6:54 pm

jimmylegs:

I really feel foolish for misplacing my paperwork. It's here somewhere. As for the thyroid, I believe I had the TSH and T3 done and thought they seemed pretty low (I research a lot to try and get a grasp on what I am looking at) and my GP ran a T4 and said it was ok, but didn't give me numbers. No matter what, I go in for my shot on Friday and can ask for a copy of the results. The new neuro made a copy of it all. As for the tests the new neuro did, I will also ask for copies on Friday.

As for meat, I usually eat beef, chicken and bacon with pork chops and shrimp thrown in once in a while. I don't do fish. I can't get over the texture. I eat about 6-8 eggs a week, 1/2 lb of cheese- mostly cheddar as a snack, bascially no wheat except a few triscuits here and there, occasional sugar in sour candy, and the occasional yogurt- no other dairy.

lyndacarol:

I did watch one video about 50 minutes long with 4 patients stories. It really brought it home how serious this actual is. I will watch the other you have suggested. I do suffer from IBS and have for years. I never even thought it could have a connection until right now, I will ask the neuro about the methylcobalamin. To add from your list, I also have Anxiety, Irritability (on meds for both), abnormal gait (neuro called it cautious gait), and stomach/ gi problems.

NHE:

I will look into the mthylcobalamin from my local compounding company. I know one right up the road from my infertility treatments. Do you know if I would need and RX? Also, the sublingual tabs, would it be wise to take them while getting the shot? Would they do any good?

I am taking all this info down and have everything to take with to the neuro . He seems to want to help so if I go in with tests I want, I am sure he will do them. I had told him of early heart attacks in my family and he ran additional tests to see if if it could possibly be due to a genetic clotting disorder. He's a great guy. Do you think it is worth while to get an LP done? He has also offered this. I am on the fence. I think it would rule out MS completely bc of the O bands. Any thoughts?

Thank you all for helping me. You have provided a lot of info for me to go on and a lot to take to my neuro to get some answers. I am also thinking about moving up my appt ( he said to if things changed) due to the painful numbness/ tingling. You have answered more and have provided more info than all my drs combined in my life. My GP, when I finally brought it up ( I kept it quiet a long time), told me I had sleep apnea?!?! I truly appreciate it.
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Re: Not sure what to believe

Postby NHE » Sun Jun 08, 2014 9:28 pm

sadieceline wrote:I will look into the methylcobalamin from my local compounding company. I know one right up the road from my infertility treatments. Do you know if I would need and RX? Also, the sublingual tabs, would it be wise to take them while getting the shot? Would they do any good?

I am taking all this info down and have everything to take with to the neuro . He seems to want to help so if I go in with tests I want, I am sure he will do them. I had told him of early heart attacks in my family and he ran additional tests to see if if it could possibly be due to a genetic clotting disorder. He's a great guy. Do you think it is worth while to get an LP done? He has also offered this. I am on the fence. I think it would rule out MS completely bc of the O bands. Any thoughts?


Hi Sadie,
Methylcobalamin as an injectable preparation will require a prescription. Your doctor should advise you if you should take sublingual B12 in addition to shots. Some people take them concurrently, some take them as a follow up to shots and others take them instead of shots. Dosage for both the shots and the sublingual B12 is a factor.

The spinal tap (LP), if positive, will provide information that's consistent with a diagnosis of MS. However, the presence of oligoclonal bands is not exclusive to MS. In addition, many people get particularly bad headaches as a result of the LP. Mine lasted for a week and every time I stood up it felt like someone was trying to pull my brain out of my head through the back of my neck. However, the risk of a post LP headache can be minimized by 1) the needle bevel should be oriented parallel with the long axis of the spinal cord so that there's less risk of cutting the fibers of the dura and 2) remain lying down afterwards for as long as your doctor recommends, e.g., 30-60 min.

By the way, when you had your B12 tests done, did they check your homocysteine levels? Homocysteine is a toxic amino acid that's eliminated by B12. If B12 is low, then your homocysteine levels can be high. The standard laboratory range is 4-12 µmol/L. High homocysteine can lead to cardiovascular disease, e.g., high blood pressure, atherosclerosis and increased stroke and heart attack risk. If your family members that had the early heart attacks are still alive, then it might be a good idea for them to get their B12 and homocysteine levels checked.
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Re: Not sure what to believe

Postby sadieceline » Wed Jul 16, 2014 3:46 pm

Sorry it's been a while. Here is the info I got from the neuro. Not sure what all it means and a little perturbed this is all the tested for. I was under the impression a lot more was being done :confused: I did ask if I needed to see him because nothing has changed since starting the shots- I've had 7 and now on to OTC B12 supplements- and was told that he won't see me until my Topiramate is reduced. I'm just going to have my other dr stop it and give me something else. Neuro said he will recheck my b12 in August. Wouldn't the shots and supplements make that number high anyway?

Anyway, here is what I got:

B12- 243
Sed rate- 13
Immunofixation/ serum- No monoclonal proteins seen
Rheumatoid Fact/Ser- <10
ANA HEp-2 Substrate- Negative at <1:40

thanks guys.
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Re: Not sure what to believe

Postby THX1138 » Wed Jul 16, 2014 5:37 pm

243 for B12 is far too low.

Antiepileptic drugs interact with folate and vitamin B12 serum levels.
Linnebank M1, Moskau S, Semmler A, Widman G, Stoffel-Wagner B, Weller M, Elger CE.
Author information

Abstract
OBJECTIVE:
Antiepileptic drugs (AEDs) are important for the treatment of epilepsy, psychiatric diseases, and pain syndromes. Small studies have suggested that AED treatment reduces serum levels of folate and vitamin B12.

METHODS:
This prospective monocenter study aimed at testing the hypothesis that AED treatment is associated with folate and vitamin B12 serum levels in a large population. A total of 2730 AED-treated and 170 untreated patients with epilepsy and 200 healthy individuals were enrolled.

RESULTS:
Treatment with carbamazepine, gabapentin, oxcarbazepine, phenytoin, primidone, or valproate was associated with lower mean serum folate levels or with a higher frequency of folate levels below the reference range in comparison with the entire group of patients, untreated patients, or controls. Treatment with phenobarbital, pregabalin, primidone, or topiramate was associated with lower vitamin B12 levels compared with the entire group of patients. Vitamin B12 serum levels were higher in patients treated with valproate compared with the entire group of patients, untreated patients, and healthy controls. Folate or vitamin B12 levels below the reference range were associated with higher mean corpuscular volume (MCV) and higher homocysteine plasma levels. Vitamin substitution for 3 months in 141 patients with folate or vitamin B12 levels below the reference range yielded normal vitamin levels in 95% of the supplemented patients and reduced MCV and homocysteine plasma levels.

INTERPRETATION:
Treatment with most of the commonly used AEDs is associated with reduced folate or vitamin B12 serum levels and is a risk factor for hyperhomocysteinemia. Oral substitution is effective to restore vitamin, MCV, and homocysteine levels.

Copyright © 2011 American Neurological Association.
http://www.ncbi.nlm.nih.gov/pubmed/21246600
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Re: Not sure what to believe

Postby NHE » Wed Jul 16, 2014 11:01 pm

THX1138 wrote:243 for B12 is far too low.


Agreed. You could always try a sublingual methylcobalamin supplement. There are several that also include folate. The brand I'm currently using is called Superior Source. The tablets are small and they dissolve in about 30 seconds.
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