[corporateoar]

Hello. So glad for this thread, have read through half of it. Looking for some answers, opinions please.

I'm a 41 yo guy who has been dealing with shaky/weak legs for 4 years or so. Just thought it was because I was overweight. Starting in Feb, my condition has been getting worse, difficulty standing or walking for long, lots of anxiety, shaky stomach muscles. In the last 4 weeks, I've developed morning numbness along the outer sides of my quads and feet. I can now only stand for 15 or so minutes before I shake and have to sit. It's awful. I can barely go outside. Sunlight overwhelms me and I have to sit down and go inside. I am not a vegetarian, although I have eaten no red meat and tuna in the last 2 months. Have resumed this week.

Last week I was diagnosed with low B12. 'Less than 150' on a scale of 200 to 1000 blood test. My MCV is actually 85.9 on a scale of 86 to 110. I did a urinary uMMA test 2 weeks ago which resulted in a 'normal' result of 1.4. I think less than 3.4 is normal.

My doctor advised 2000mg/day for 2 weeks, then 1000mg per day, oral B12, which I am taking in the morning on an empty stomach. I have been taking the oral B12 for 9 days with zero improvement so far. In fact, I'd say I've been getting worse.

My questions:
1. How long will it take for me to see improvement while taking oral B12? I have a very important family function to attend over Labor Day and in my current state, I couldn't do it.
2. I just received Jarrow 5000mg methylB12. Is it better to take this in 2 doses during the day?
3. Any harm in bumping up to 7500mg orally?
4. I'm going to ask my doc for daily injections tomorrow at my appt. I know that the common mantra is that oral is just as effective as injections, however I suspect the injections will help me feel better faster. Is that true?
5. Any insight into my inconsistent MCV and uMMA values. With B12 deficiency, I expected both of these to be out of line, but they aren't. The uMMA lab suspects that my blood B12 test is incorrect. Is that possible? With my symptoms, it seems unlikely. Could I be iron deficient too with that MCV value?

Many thanks for any replies to these questions. My good thoughts are with everyone working through this issue.

[pabb]

clean up the rest of your diet, if needs be. make sure your potassium intake is adequate. elevated levels in those two tests would bolster your low B12 results, but ,the normal doesn't negate. Several week, ,to months to see sig. results. Think a week of shots might be a good idea, BUT, again, clean up your diet, (if needed) and get plenty of potassium! Have you had a BMP done? That would be a basic metabolic panel; just want to make sure your potassium is not already high.....it has a fairly narrow range, don't want to go overboard. Good luck!

[corporateoar]

Thanks Pabb for reply!

Primary care doctor would only give me B12 shots every other week for 7 weeks. AND she instructed me to STOP taking the B12 orally during these 7 weeks so I don't get a toxic B12 condition!!! I tried explaining that this isn't possible, but no dice. I'm going to take the B12 shots and probably learn how to stick myself for a week.

My diet is actually very clean overall. I just stopped eating red meat because I dislike handling it, but I've resumed eating red meat so I can get my iron and B12.

I have had a full blood panel done. Potassium is smack in the middle of normal range, so I might just eat more potassium rich foods. Thyroid levels are good. The only outlying values are the ones in my original post.

I'm a bit frustrated and confused, but will be searching for a new doctor today.

[ginnie]

Welcome to Neuro Talk. I am taking B12 shots weekly, and have for a year with a few other suppliments. I am alot better in the walking dept. I give the shots to my self and don't mind a bit. I have PN in my feet and ankles. Ask your Doctor. I also take Bcomplex daily. Hope you get some improvement. It took me the better part of 6 months to really notice a difference. ginnie

[Brian]

Hi, I agree with prior post, it can take many months to years in some cases before you notice any improvement, trouble is whilst the nerves are trying to heal they are still sending incorrect messages to the brain, I noticed flaring of symptoms at the start of recovery but as the time went by the flares were not as severe and not lasting as long as the previous ones but this went on for a long time.

[mrsD]

If you have the DNA mutation that
blocks methylation using cyano form
in injections will not work.

Methyl cobalamin bypasses this error.
It is thought today that 10-30% can
Be affected by this mutation.

[corporateoar]

Thanks Mrs. D, Brian and ginnie for your replies!

I'm sorry to hear that recovery can take so long, but at least I know what I need today.

I'll just keep updating my status on this page in case others want to read.

I have been taking 5000mcg/day (methylB12) in divided doses sublingually for the last 3 or 4 days. I also added about 1000mcg/day of dibencozide starting yesterday.

Today I got a B12 shot of cyanocobalamin. Within 15 minutes I was very drowsy, but stayed awake. Definitely felt a little 'out of it' or disassociated from reality. An hour later I just had to take a nap and slept for 2 hours. Hope this is a normal reaction. Just ate a bunch of potassium rich foods.

I've got a new appointment with another doctor next week who may be willing to bump up my B12 shot frequency to at least weekly.

Some of the numbness in my legs has improved slightly over the last day or 2, although they still feel very weak. New symptom yesterday morning (before taking dibencozide): sudden weakness/zapping in my forearms and hands. It made it difficult to squeeze anything and was pretty scary. Today my forearms still feel a little weak, but way better than yesterday.

I spare a thought today to those who have been dealing with this for a long time and those who have yet to discover their own B12 deficiency.

[corporateoar]

I just wanted to leave an update for anyone who might come across this thread in the future.

In about 6 weeks, I brought my B12 level up from 'less than 150' to 1300, which is above normal, but not dangerous. I took 2500 mcg Jarrow methyl B12 twice a day sublingually. I put a pill under my tongue and let it sit there and slowly dissolve over 60-90 minutes. I made sure not to swallow it, just let it sit under my tongue.

I only received one B12 shot from the doctor (cyanocobalamin). I didn't follow up with the shots because I preferred to get methyl B12 based on my research on B12 deficiency.

The numbness and tingling I was experiencing in my legs and arms is now pretty much gone.

My legs are still very weak, but it turns out I have another medical issue that is most likely causing that. I'll still take my B12, but I'm moving on to treating this other issue.

If you are recently diagnosed with B12 deficiency, I recommend you get the same methyl B12 form that I did. At least you know that it normalized my blood level after less than 6 weeks. For your reference, my physicians also tested me for folate, lyme disease, thyroid, and cortisol. All were normal, but you may want to request these tests as well. Take care!

[SunnyWalk78]

Originally Posted by corporateoar

I just wanted to leave an update for anyone who might come across this thread in the future.

In about 6 weeks, I brought my B12 level up from 'less than 150' to 1300, which is above normal, but not dangerous. I took 2500 mcg Jarrow methyl B12 twice a day sublingually. I put a pill under my tongue and let it sit there and slowly dissolve over 60-90 minutes. I made sure not to swallow it, just let it sit under my tongue.

I only received one B12 shot from the doctor (cyanocobalamin). I didn't follow up with the shots because I preferred to get methyl B12 based on my research on B12 deficiency.

The numbness and tingling I was experiencing in my legs and arms is now pretty much gone.

My legs are still very weak, but it turns out I have another medical issue that is most likely causing that. I'll still take my B12, but I'm moving on to treating this other issue.

If you are recently diagnosed with B12 deficiency, I recommend you get the same methyl B12 form that I did. At least you know that it normalized my blood level after less than 6 weeks. For your reference, my physicians also tested me for folate, lyme disease, thyroid, and cortisol. All were normal, but you may want to request these tests as well. Take care!

Thanks for keeping us updated, I'm new to the site and I am also going through the Vitamin Deficiency issue. Currently I take a high dose prescription once a week for my Vitamin D and I have to get the homocysteine and methylomaic acid tests this weekend to confirm my low vitamin B, a couple of weeks ago it was at 285. I have achey joints and have nerve damage to my right peroneal nerve. I'm hoping the shots will help with everything. Due to my stomach ulcer I may have to stay with the shots, I'm thinking the ulcer may be the culprit in my defiency.

[Dr. Smith]

Originally Posted by SunnyWalk78

Due to my stomach ulcer I may have to stay with the shots, I'm thinking the ulcer may be the culprit in my defiency.

Hi SunnyWalk, Welcome.

Have you been treated with any antibiotics for the ulcer? If so, I would check them against antibiotics known/suspected to cause PN/neurological disorders. If not, and medications are proposed to treat the ulcer, I would check same, and have a discussion with your doctor about alternatives.

Doc