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
Signs and Symptoms of B12 Deficiency:
Sore Mouth or Tongue
Fatigue (your "extreme tiredness")
Mental Impairment (your "lack of concentration, loss of memory, loss of words")
Visual Disturbances ("double vision")
Stomach and G.I. Problems
Limb Movement Disorders
Thoughts of Suicide
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.
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?
http://www.ncbi.nlm.nih.gov/pubmed/21246600Antiepileptic drugs interact with folate and vitamin B12 serum levels.
Linnebank M1, Moskau S, Semmler A, Widman G, Stoffel-Wagner B, Weller M, Elger CE.
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.
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.
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.
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.
THX1138 wrote:243 for B12 is far too low.
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