How long before I will see improvements in my symptoms?

[mzdawn74]

Hello,

I just started taking Jarrows B12 methylcobalamin 5000mg losenges today, and am waiting on my injectible B12 to be delivered within the next week.

I am currently suffering from severe cognitive impairments as well as physical symptoms such as confusion, memory problems, poor concentration, hard to remember words, dizziness, feeling off balance, heart racing, insomnia tingling/numbness/weakness in hands, arms, legs, and feet. I have many other symptoms as well, but I am mostly concerned with these.

I know that no one is able to give me an exact time frame as to when I will see improvements of these symptoms. However, I would greatly appreciate if you could share your experience with how long it took you to feel symptom improvement.

Thank you!

Dawn

[wedgewood]

I have to say that I recovered very quickly with Hydroxocobalamin injections. (within 2 weeks , having had the loading injections) Nothing else helped(Nasal spray sub-lingual lozenges patches) BUt didn't last long! Couldn't wait 3 months, so started self-injecting. I inject once a week now. Remember that FOLATE is also important! Best wishes to you.

[Babygodmother]

I agree, it took two weeks of loading dose to feel better then my utterly incompetent GP & neurologist said they didn't want to overdose me and they decided it was all in my head and stopped the injections. My symptoms are all like you, the worrying thing was I was going downhill very quickly. I am now self injecting every other day and will continue for the next week or so every other day to avoid permanent neurological injury. It was rough last week as I felt awful with terrible headaches but much better the last few days and getting there. I will inject when I feel I need to.

Doctors have NO CLUE with regards to this extremely common disease that is cheap and easy to treat.

Keep well x

[pvanderaa]

Since you have recently started on loading doses, please start a logbook or diary of your symptoms (along with some scoring of severity you can measure - time to do some simple task - few minutes, walk, memory tests on the internet, game of majong, etc.) along with food and drink. Some manifest with similar symptoms. The log provides the reference because there is a time delay between taking a medication, eating or drinking and the symptom. This can be 6, 12, 24 even 48 hours later because the gut and the liver are involved.

Some new symptoms will also appear from the injections themselves. These are similar to other symptoms. Pain or hunger are particularly annoying ones that are an illusion because the healing is making the signals in the nerves stronger. The brain takes a while to recalibrate and so initially interprets the stronger signals as pain, or in the case of the vagus nerve as hunger.

The symptoms from the injections always repeat in approximately the same order for a couple of days after the injection. Mine were headache, aggression, stomach problems, diarrhea, etc. The stomach issues arise from the body detoxifying after getting B12. All the metabolisms seems to start at once and overwhelms the liver with byproducts. These end up in the gut.

Some may see these as "bad" symptoms but, if they follow the jab, they are signs that the medicine is working. The worse the detoxification symptom, the lower the level of B12 in the body before the injection. It is an indication that you need more B12.

Use the logbook to have a discussion with your GP. Especially note neurologic problems that seem to be getting worse. This is where the scoring system comes in. Nerve damage takes a long time to heal and one of the symptoms is loss of short term memory (I forgot how bad I was.) The measurements in the log book reassure that things are improving at a snail's pace. You stick with what is working in the long term and just monitor the roller coaster of up and down daily symptoms.

The log also provides evidence to your GP that you in fact are not a hypochondriac as it may first appear with increasingly more and more symptoms. This over time will hopefully convince the GP that you needs more B12. Discuss your plans with your GP and provide them a copy of your results and observations at each visit. Holding a piece of paper in their hands somehow seems to have more impact that just talking about it. Keep your composure and treat the GP as your partner in this "investigation". They are not the enemy and you need them to make the prescriptions and referrals.

Don't forget that you also need to supplement with Folic Acid (several mg each day whatever works - I can't handle more than 3.2 mg and I find it is a balancing act between Folic acid and B12. Too much Folic acid and I get thumping in my ears. The max on prescription is 5 mg.) along with a multivitamin for metals and minerals that can get depleted after starting the B12 injections, due to the metabolism taking off at full tilt. Keep your GP informed when you change any meds or vitamin supplements and bring along the bottles of supplements for them to record information into their files.

Watch for symptoms from food. If you suspect one, remove it for two weeks to completely detoxify from its effects and then reintroduce and monitor for the symptoms to return over 48 hours. When I was working through my reactions to gluten and dairy which started about the same time my B12 deficiency was diagnosed, I would eat the same food like a rice casserole for several days in a row just to maintain some constant is all the variables. I knew what I put in it and could therefore build up a list of ingredients that worked for me, with one new ingredient each time.

Also once a person starts on B12, they begin to do more and tire out from activities they would not have attempted before. Gentle exercise is needed to restore damaged nerves (walking, swimming, "thought" exercises too). The movement of the muscles activates the nerves to heal. "Only use the muscle (and nerves) you want to keep". Getting started is always the hardest. Work through the "pain" - remember it is just an illusion. I found that once I got going, I seemed to improve and felt less and less pain in my body. How do you convince yourself that this is in fact the case?

You will be having a fight to get the GP to provide the level of B12 you need because the "professionals" have made a mess of the recommendations to the GPs. The testing and retesting for B12 levels will only confuse and tempt the GP to make poor decisions.

Once you are on injections, >900 is the only valid result. >1500 is even better. This is my experience and not written anywhere. Anything less and you will be suffering at some point between injections. Symptoms will start to reappear earlier each time. Remember you cannot overdose from too much B12. Don't let them say "your levels are now normal" and stop the injections. The nerve damage starts up immediately and is relentless in its progress. This is the scary part of "pernicious".

Treat by the symptoms that you have. Use additional B12 supplements 2x 5000mcg methyl-sublinguals on a daily basis for filling in on bad days. I take mine before meetings. Energy drinks also work for me. Vit B6 and B1 are important too for repairing nerve damage. B1 tastes terrible to me.

. I've had to deal with both UK and USA GPs and train them and this log book "method" worked for me each time. Good Luck.

[ExhaustedLee in reply to pvanderaa]

Hi. I like the log book idea but it wouldn't help me because GP has said outright "no" to B12 injections so I'm going to have to self medicate.

It seems you're on top of things now and that's great!

Could you please explain what you mean by: "Only use the muscle (and nerves) you want to keep." Thank you