[Westgrl]

This is my first post here. I hope I chose the right forum. I wanted to find a place where people have experience neurological issues from B12 deficiency.

I was wondering if anyone experiencing neurological symptoms have ever had back or spinal problems from B12 deficiency? My B12 was extremely low. I had 2 severe cases of loss of balance, not being able to walk straight or falling over, and after my primary & an ENT kind of brushed it off and doing my own research, I asked that they check it. It was 163. After doing more research, I realize I may have been deficient for 6+ years. Odd symptoms that nobody could explain surfaced as far back as then. I have seen 3 ENTs & a GI and none could offer explanations. I ignored pins & needles & numbness for years. I am currently getting monthly injections but my symptoms have worsened to vibrations, increased pins & needles, more widespread numbness, tingling, etc. One day I experienced numbness just under the ribcage that spread around to the middle of my back. Pain & spasms followed. I now get pressure in the middle of my back, increased pins & needles, vibrations down one leg, & horrible back pain that gets better with rest. My primary sent me to a neurologist, he seemed not completely knowledgeable with B12 deficiency but listened to everything I said. He found diminished reflex but said that may not mean anything. I go to get an MRI & EMG in 1 month so I have to suffer until then.

I can only find limited information of people suffering back pain & spinal degeneration from B12 deficiency. My B12 levels are up to 406. I am thinking of trying Benfotiamine in addition to my B12 therapy. Part of me wants to believe I am healing & maybe if enough damage was done, the healing may be inflaming the nerves temporarily but I can't evidence that this happens. I just feel lost right now & it's so frustrating that doctors don't seem to know much. If I had asked for the blood test myself, I probably would still be undiagnosed.

[tblaw]

Originally Posted by Westgrl

This is my first post here. I hope I chose the right forum. I wanted to find a place where people have experience neurological issues from B12 deficiency.

I was wondering if anyone experiencing neurological symptoms have ever had back or spinal problems from B12 deficiency? My B12 was extremely low. I had 2 severe cases of loss of balance, not being able to walk straight or falling over, and after my primary & an ENT kind of brushed it off and doing my own research, I asked that they check it. It was 163. After doing more research, I realize I may have been deficient for 6+ years. Odd symptoms that nobody could explain surfaced as far back as then. I have seen 3 ENTs & a GI and none could offer explanations. I ignored pins & needles & numbness for years. I am currently getting monthly injections but my symptoms have worsened to vibrations, increased pins & needles, more widespread numbness, tingling, etc. One day I experienced numbness just under the ribcage that spread around to the middle of my back. Pain & spasms followed. I now get pressure in the middle of my back, increased pins & needles, vibrations down one leg, & horrible back pain that gets better with rest. My primary sent me to a neurologist, he seemed not completely knowledgeable with B12 deficiency but listened to everything I said. He found diminished reflex but said that may not mean anything. I go to get an MRI & EMG in 1 month so I have to suffer until then.

I can only find limited information of people suffering back pain & spinal degeneration from B12 deficiency. My B12 levels are up to 406. I am thinking of trying Benfotiamine in addition to my B12 therapy. Part of me wants to believe I am healing & maybe if enough damage was done, the healing may be inflaming the nerves temporarily but I can't evidence that this happens. I just feel lost right now & it's so frustrating that doctors don't seem to know much. If I had asked for the blood test myself, I probably would still be undiagnosed.

Hi there, I am 40 years old and I have been suffering from severe nerve pain (like hot lava has been dropped on your back) on the left side of my back and down my left arm for almost 2 years. I have had the nerve conduction study done by a neurologist, I have seen 2 pain managment specialists, 5 MRI's, and several back and neck injections. I take a cocktail of medications 4times a day. I just found out yesterday that I my B12 was dangerously low and my doctor gave me an injection and scheduled me for another one in 2 weeks and then every month after that. I feel like I just recieved the best xmas present ever! My pain in 90% gone, I have the use of my left hand again, and I am not falling asleep at my desk. All the pain managment doctors did not believe me; they just thought I was there for pain meds and treated me like a drug addict. I am so relieved it is possibly something that can be fixed.

[Westgrl]

Originally Posted by tblaw

Hi there, I am 40 years old and I have been suffering from severe nerve pain (like hot lava has been dropped on your back) on the left side of my back and down my left arm for almost 2 years. I have had the nerve conduction study done by a neurologist, I have seen 2 pain managment specialists, 5 MRI's, and several back and neck injections. I take a cocktail of medications 4times a day. I just found out yesterday that I my B12 was dangerously low and my doctor gave me an injection and scheduled me for another one in 2 weeks and then every month after that. I feel like I just recieved the best xmas present ever! My pain in 90% gone, I have the use of my left hand again, and I am not falling asleep at my desk. All the pain managment doctors did not believe me; they just thought I was there for pain meds and treated me like a drug addict. I am so relieved it is possibly something that can be fixed.

Wow, that is awesome! Once I did some research, it amazed how many Dr either miss B12 or just ignore it. Unfortunately, I think I have more long term damage because B12 shots didn't give me instance relief. In fact, some new symptoms appeared after I started treatment. My numbers are going up slowly. I'm glad you have experience relief right away! I am going for yet another MRI tomorrow to make sure there's nothing in the spine actually causing the pain.

[better12]

This is an interesting thread...

Why my B12 numbers are not currently as low as 'Westgrl' I suffer from similar symptoms.

Unlike so many others on this board, I had a negative skin punch biopsy for small fiber neuropathy and in addition to PN-like symptoms in extremities, I also have extremely bizarre neuro symptoms in my spine (buzzing, vibrating, burning/tingling immediately to the left of spine from about C7 to T9) - and with all of this, I have 'normal' MRIs.

I am 42 years old and have been living with this for abour 5.5 years. Symptoms often escalate when taking the common 'cocktail' for PN (Alpha Lipoic/B12/Benfotiamine) yet I do NOT have escalation when just B12 shots - yet no improvement either - perhaps long-term adherence to the supplement will lead to improvement ?

Not sure if I've been of any help, just wanted to share notes.

By the way Westgrl, what is your age? Are you vegetarian and/or consume very little red meat or eggs? Have you had Vitamin D3 tested?

JB

[mrsD]

When a person is very low in B12 for a period of time and then
starts to supplement it, there are adjustment issues. We had a poster here Rose who has a webpage devoted to B12, and she was in bad physical shape from years of low B12. She used to post here, and often said that her recovery was marked with ups and downs and strange sensations.

This is her website:
http://sites.google.com/site/roseannster/home
this is a quote from Rose's site under treatment:

Oral Treatment:

Goldman: Cecil Textbook of Medicine, 21st Ed., W. B. Saunders Company, Page 1056

"Oral cobalamin, 1 to 2 mg/day [1000 to 2000 mcg per day], is the treatment of choice for most patients. This [oral] dose is as effective and possibly superior to a parenteral [shots] regimen in all causes of cobalamin deficiency because 1 to 2% of an oral dose is always absorbed by diffusion. For patients who may not be compliant [may not continue treatment on their own], intramuscular or subcutaneous cyanocobalamin can be given. One approach consists of injections of 1 mg of cyanocobalamin [the cheapest and least effective form of B12] once per week for 8 weeks, then once per month for life. More frequent injections often are used in hospitalized patients or patients with marked neuropsychiatric abnormalities, but no evidence of incremental benefit has been shown. When the weekly injections are completed, the patient or a family member or friend can be taught to give the monthly injections. Parenteral and high-dose oral regimens give prompt and equivalent hematologic and neurologic responses, but post-treatment serum cobalamin levels are significantly higher and post-treatment methylmalonic acid levels are significantly lower with the oral regimen. With either the parenteral or the oral regimens, the absolute requirement of lifetime therapy must be well understood by the patient and the patient's family. Because cobalamin is inexpensive and free of side effects, it is better to give too much than too little [If there is a symptom indicating reaction, it is a good thing]."

Doctors not only miss B12, or ignore it, they also under treat it too!

Your best therapeutic way can be controlled by you. Daily use of 5mg orally, on an empty stomach, matches the way our bodies have metabolic systems for processing B12. Injections dump 1000mcg into your system and that lasts ---drumroll-- 72 hours at best. This this the pharmacological facts of B12 injections. We did not evolve to absorb or utilize B12 in huge bolus amounts. It is a microgram nutrient. When you take it daily orally, a few micrograms will be absorbed even if you no longer have intrinsic factor. This is why you MUST use it on an empty stomach--so passive absorption is aided.

Studies have proven results with oral forms taken in at least 1000mcg DAILY doses. For people really low, or who have been low for a LONG time, I think 5mg daily (5,000 mcg) is more effective. Levels of 400 are barely normal, and in a person previously very low, should still be raised to about 1000 or more, to try to catch up all metabolic systems including the brain and spinal cord. After 3 months on 5mg oral daily, get tested again, to see what your new level is, and maintain that.

It took a period of time to get where you are now (low)...it will take time to correct.

Here is a link to Dr. Snow's expert article that explains neurological effects of low B12 and how he found some patients in the 400 range who improved with further therapy.
http://neurotalk.psychcentral.com/post698522-70.html

This is my B12 thread with studies on success with oral, and why methylcobalamin is preferred:
http://neurotalk.psychcentral.com/sh...highlight=Snow

[zorro1]

Mrs D
I take 2 of theses mega B complex pills a day. Below are the ingredients. My B12 is in the normal range.
Do you think the ingredients are okay? and should I modify my dosage?

Vitamin B1 (Thiamine hydrochloride) 50 mg
Vitamin B2 (Riboflavin) 30 mg
Nicotinamide 100 mg
Vitamin B5 (Pantothenic acid from calcium pantothenate 50 mg) 45.8 mg
Vitamin B6 (Pyridoxine hydrochloride) 50 mg
Vitamin B12 (Cyanocobalamin) 50 µg
Choline bitartrate 50 mg
Vitamin H (Biotin) 50 µg
Inositol 50 mg
Folic Acid 300 µg


I have also started to take Nueromet 500 x2/day . Its produced here in Thailand.

"B03BA05 - mecobalamin ; Belongs to the class of vitamin B12 (cynaocobalamin and analogues). Used in the treatment of anemia."

[mrsD]

Zorrro, does the label say "2 capsules contain"?

If so that seems okay to me. With the added mecobalamin separate, you should be okay. If not, and ONE capsule contains those doses, I think 1 a day is enough.

Most people feel best taking the complex in the morning, and some people get heartburn from them. In that case take with a light meal etc.

But take the mecobalamin on an empty stomach, separately.

[zorro1]

Originally Posted by mrsD

Zorrro, does the label say "2 capsules contain"?

If so that seems okay to me. With the added mecobalamin separate, you should be okay. If not, and ONE capsule contains those doses, I think 1 a day is enough.

Most people feel best taking the complex in the morning, and some people get heartburn from them. In that case take with a light meal etc.

But take the mecobalamin on an empty stomach, separately.

Thanks its just 1 capsule per day as the recommended dosage. I will scale back to one.

[Westgrl]

Well I got the results of the cervical & thoracic spine MRI. Essentially, I have lesions in my spine. Where I am getting most of the pain, there is a lesion 5mm in length with slight thinning of the cord. This is at the T4/5. The bones & disc are all fine. So the lesion & thinning of the cord has to be the cause of my pain.

Now the problem is the neuro is fixated on dxing me with MS and I believe this may be a result from my extremely low B12 for a long period of time. However, he won't even entertain the thought. So, I either continue with spinal taps, etc for this or I seek a 2nd opinion. But I have no idea how to find a Dr who really knows anything about B12 deficiency. My main concern now is getting my levels up and wanting to know if this is something that will get better or not, assuming it is caused by the B12 deficiency. The family Dr admitted the results of my MRI are beyond his expertise. It's so frustrating.

I am continuing taking 5000 B12 methyl orally and also 250 mg of Benfotiamine. I get my number tested again in a month.