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Need Help Please

6 months ago•22 Replies

Hi all. My story is long so here goes. In 2010 I was hit twice by the same car on a hwy and had a lot of issues and pain etc. Ten mths later I literally thought I was going to die. Was off work for 14 mths w/ b12 def. My dad has PA and to my knowledge I was never tested but assume I have it. Life was never the same for me. Doctor would only give weekly shots back then but I had all the symptoms including neurological ones. I never received proper treatment. Throughout the years I had many issues that I now know was not enough b12. Forward to Aug 2020 and I hit my and still have post concussion. During this time I was finally diagnosed w/ cervical/jaw dystonia which started right after the car accident. My b12 also got really low again. I was on every 3 day shots until last yr, then eod. Again I felt low recently and am on daily shots. I live in Canada and my doctor is great and tells me it’s my body and only I know how I feel. My symptoms are improving somewhat and last week my tongue didn’t burn but this week it’s back and tingling and some twitches. I am so stressed as both times I was bad before I was put on antidepressants and they mask the symptoms and healing process. Is this normal for symptoms to come and go while healing? Recently I got Methylcobalamin 10ml but it’s $200 so I’m only using it twice per week and the only other option is cyano shots. I’m just so scared right now and any thoughts would be appreciated. I too in the beginning was treated like an idiot until I finally fought for myself three yrs ago. Also, my doctor doesn’t feel comfortable with me trying hydroxo shots from Europe. Does any know where I can gets those within Canada? I’m scared that cyano isn’t working for me anymore.

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Swift206 months ago

Sorry, in August 2020 I meant to say I hit my head.

am1116 months ago

Why do your think cyano isn't working for you? As far as I have observed, all forms work. You have to be consistent and if there is improvement week over week, then it is working. Sometimes, the improvement in neurological symptoms is slow, but some other things should improve much faster.

Swift20 in reply to am1116 months ago

I guess b/c I don’t understand why I was good with every 3 days for 1.5 yrs, then eod for awhile. And the one thing I did always notice was that my burning tongue went away quickly. I do notice my hair isn’t falling out as much, my stomach actually makes noises now and tells me I’m hungry. So I do have some improvement. The body sensations are so scary, is twitching normal in recovery? I always had that creepy crawly sensation when I was low. Maybe I need a lot more due to my post concussion and dystonia?

am111 in reply to Swift206 months ago

Recovery from B12 deficiency is slow. Muscle twitches can increase on recovery as the nerves start healing. Same for burning tongue etc. However, it can be opposite also. You have to see other symptoms such as energy level etc. to see if your B12 is sufficient or not. It is well known that neurological problems take months and even years to get fixed and longer the duration for which the symptoms have prevailed, the longer the recovery period.

As I said before, the key is consistency in whatever dose/frequency we are using. In my experience, increasing doesn't really help (at least it did not help me to increase beyond once-a-week). Especially, any decrease leads to return of symptoms, so you should continue on the schedule you are currently on and don't change either the schedule or the type (as different types can have different strengths etc., for e.g. cyano is retained much less than hydroxy). Also, I am not sure a change to methyl or hydroxy would help. There are many here, including me, who have recovered well on regular cyanocobalamin injections (I SC 50mcg/day). This is just my experience and you may feel differently.

Swift20 in reply to am1116 months ago

Thanks so much for your help! My energy is pretty good, prob the best it’s been in a long time. So I guess I just have to be patient and not let the other symptoms scare me. And I can breathe good. First week of Oct was bad and I couldn’t breathe good. I see now that I never had anxiety I just wasn’t getting oxygen due to lack of b12.

am111 in reply to Swift206 months ago

I have the same problem. Feel anxiety due to lack of oxygen due to lack of B12. It appears that you are improving on the current schedule. My advice is to continue on the current schedule and not change anything. Your B12 levels are fine and a good amount of active B12 is reaching the cells. Now, the body will just take its time to heal and you have to be patient. Good luck!

am111 in reply to Swift206 months ago

Also, the first things to improve on good B12 levels is digestion. My hunger was very poor on bad B12 level and one of the first signs of recovery is improved hunger and digestion. Hence, your B12 is definitely fine and you just have to be patient for neurological improvements.

Swift20 in reply to am1116 months ago

Isn’t it funny how we brush off symptoms like that. This makes me feel so much better. Digestion is definitely improving!

Saoirse20166 months ago

A good doctor is worth their weight in gold, ask him/her about alternate versions of B12 as the one you're getting doesn't seem to be working.

Might be worth your while asking them to test your cortisol levels, stress causes a build up of cortisol, and that build up can cause Cushing's Syndrome. They should be able to do something about that.

Hope you do get some help with your issues

Swift20 in reply to Saoirse20166 months ago

Thanks, I will try mentioning that!

Oneash6 months ago

Yes to reversing out being a bit of a rollercoaster. How I see it is as your body gets the B12 and oxygen it's been starved of it first does basic maintenance, up, then it can do deep maintenance of e.g. kidneys, down, kidneys heal, up, so then all the toxic crap that your kidneys haven't dealt with that's been stored in a load of body fat gets released, down..... I've been having lots of aches, spots, sinus crap. Days of feeling near normal and happy, followed by days of sleep and don't give a fiddler's fart.

It sounds like you have been through hell and your body hasn't had the resources to heal properly.

Big hugs and keep regularly injecting. I use cyanocobalamin to inject and methylcobalamin spray. 🍀

Swift20 in reply to Oneash6 months ago

Ok, this help me feel better. Maybe my expectations are off b/c I had one good week. It’s almost like PTSD when you are scared b/c you know how bad it can get.

I’m going to order some liquid b12 since I take sublingual and it appears to not help at all.

Hugs to you too!

Litatamon6 months ago

You can have a naturopathic doctor order different forms from a compounding pharmacy. You obviously have an open GP, so I don't see any reason they could not facilitate this as well.

There is no issue of getting the hydroxycobalamin from Germany, re: your doctor's fears. It has been a while since I have done that, but I believe even with shipping it was the more reasonably priced option.

Yet no comparison at all to how incredibly cheap b12 vials are here in Canada.

All the best to you.

Swift20 in reply to Litatamon6 months ago

Thanks. It appears health Canada has become more strict w/ compounding pharmacies so I could only get the Methylcobalamin Injections and $200 is too expensive. I will call some others to see if I can get other options.

Litatamon in reply to Swift206 months ago

Could it be a provincial issue even though you are mentioning Health Canada, as it was at some point during the pandemic that I had access to all forms via compounding? (Ontario). Especially since b12 is not normally prescription based anyway.

M y order from Germany was way cheaper so I declined. And there should be no fears there. I mean cyanocobalamin is a vial, your order from Germany is single-use so the fear your doctor is bringing to the table has no merit.

Hope you get it all figured soon.

Swift20 in reply to Litatamon6 months ago

It could be provincial. I’m in Manitoba and the compounding pharmacy told me that and they ordered my methylcobalamin from Calgary..

You don’t need a prescription for b12 in Ontario?

Litatamon in reply to Swift206 months ago

There are two distinct situations, to answer that question.

I can walk into any pharmacy in Ontario and simply buy cyanocobalamin from the pharmacist. No prescription needed. (When my deficiency was found, I had monthly shots at the doctor's office, I would buy vials to self-inject for a shorter frequency)

At the same time I was seeing a naturopathic doctor. She had the ability of putting in a prescription to get me hydroxycobalamin or methylcobalamin from a compounding pharmacy.

But as I noted the shipment from Germany was a much cheaper option at the time.

Swift20 in reply to Litatamon6 months ago

That’s awesome.

I agree that it shouldn’t matter if I order from Germany. Europe has better standards than Canada.

Hockey_player6 months ago

I live in BC. The pharmacies (Rexall, Pharmasave) I talked to here only carry cyanocobalamin for injections. But I also talked to a compounding pharmacy and they said they could mix up some hydroxocobalamin for injecting. It sounds like it would cost about $4.50 per dose. I would need a prescription for that. The cycanocobalamin is cheaper (about $1.30 per dose) and does not require a prescription in BC . The pharmacy that I talked to that could do it is: Island Pharmacy - View Royal, 284 Helmcken Road #106, Victoria, BC.

Swift20 in reply to Hockey_player6 months ago

Wow. I wish Manitoba would get with the times. Some of these pharmacists make me feel like a criminal for injecting frequently and I still need a prescription.

Do you know if they would ship it to Winnipeg? It’s still pricey but cheaper than my $200 vial of methylcobalamin.