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PA and anxiety

Wowo23 profile image
14 Replies

Hi allI was diagnosed with PA about 6 years ago. For years I lived with the worse anxiety. Once I started loading doses and got on a regiment(3 jabs a week) my anxiety was practically gone. I mean I would get nervous(normal type of nervous) but anxiety was all but gone. About a year ago, my new primary thought my amount of jabs was exsessive. I argued that my ortho oncologist thought it was perfect for me plus I felt way better. Anyway, months of fighting, they finally left me alone.

Fast forward to the beginning of this year and my insurance would no longer pay for 3 a week. Only 1 per week. So, now I pay out of pocket. Except the way it comes out, I spend the last week before refills without. So when I get them, I do a few days of loading doses. Que my new monthly routine.

Over the past week or so that I've been out of b12, anxiety has returned full force. Constant panic attacks. I can't seem to get a grip on this anxiety. It sucks😬 I can barely function.

My question is could the disruption of the jabs from such a perfect routine as before change that much and cause this???

I would appreciate any advice or help

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Wowo23 profile image
Wowo23
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14 Replies
JesusMercy60 profile image
JesusMercy60

hello Wowo23,

I'm new 2 1/2 months injecting EOD and I never suffered from horrible anxiety like I did last summer, I had no idea what was wrong. at first I learned that I was b12D then a few months ago I have PA. my anxiety is for the most part stable but I would bet that the change and you being without B12 has affected you. and maybe you have to build back up. what kind of b12 are you using? is it the same. did you have any neurological issues before? I know the anxiety is the worst. I never had that in my life and I could not cope either.

Wowo23 profile image
Wowo23 in reply toJesusMercy60

Yes, the anxiety is the worse. I'm so glad you're anxiety is more stable now.

JesusMercy60 profile image
JesusMercy60 in reply toWowo23

Oh I was going to ask what kind of b12 have you been taking?

JesusMercy60 profile image
JesusMercy60

hello again,

also I was reading your history and I see that you had lost lot's of weight, that was the same for me, I was normally like 145 totally active and started to lose weight my lowest was 86 lbs just over a month ago and now I'm at 100 lbs, maybe thats why it's so hard to take any multi suppliments. my body is getting better maybe because I'm gaining wieght now. also I read that you had found out you had mutated genes, what kind were they, I have two the 677 and one other and they are very common, I wondered if you were told you had to take only methylated vitamins.

Wowo23 profile image
Wowo23 in reply toJesusMercy60

I'm so glad you're gaining weight and starting to feel better. Yes, they gave the MMTHFR test for gene mutation. I'm not sure ot can't remember which mutation it is. I just remember that both my parents had this.

Nackapan profile image
Nackapan

Yrs I think a disruption in a regime that works sets you back

PlatypusProfit8077 profile image
PlatypusProfit8077

I also had the worst anxiety that really crept up on me over about 18 months.

And when I started the B12 injections it helped so much - especially now that I’m on EOD. The anxiety is totally gone. When my jabs were monthly, I’d have a few good days and then the anxiety (and other symptoms) would come back in.

I think that really strict regimen of injections is what helps me the most.

Sailinglady profile image
Sailinglady

I read somewhere (almost certainly on here, but possibly Dr Chandy's book) that when you stop the injections, you have a rapid return of symptoms.I remember when i first started treatment, i had 2 weeks of injections and then stopped and by 2 weeks later had symptoms of SACD (which hadn't been there before, or at least i hadn't had my reflexes checked before).

So, yes, that's a long winded way of saying that the disruption in your injection schedule could easily explain the worsening in your anxiety.

Wowo23 profile image
Wowo23 in reply toSailinglady

Thank you for your reply. I think that's that case with me

We are all aware of insufficient B12 and cardiovascular associated factors so, anxiety can return once B12 levels drop. I have learnt the hard way, I will never allow any so called expert to EVER suggest that I should reduce my daily B12 SC injections. My body is currently in an optimal position so, I highly recommend you take control of your own health and source your own B12 to prevent any further detrimental consequences to your health.

EllaNore profile image
EllaNore

Hello Wowo23,I'm sorry they changed your perfect routine. And im sorry it caused your anxiety to return so quickly and strong. That is very frustrating. Insurance companies are the reason for the lack of all of us getting the treatment we need. I inject everyday. Sometimes I am just tired of having to take B12 at all and I'll go two or three days without it and the very first thing that comes back is anxiety, weeping, severe migraine, balance and my feet hurt. Those are the first things that come back and tell me, oops, I need to get my B12 in me. So I feel that anxiety can definitely come back that fast and hard. Everyone is different, that might be your thing. It is definitely mine.

Anxiety is one of the worst symptoms I have. The most debilitating. It causes me to isolate a lot.

It sounds like you do not self inject. For me, and many of us, self-injecting has been a lifesaver. There's lots of information on here about where to buy B12 and have it shipped to you. I live in the United States and I have mine shipped from Germany. I don't know what I would do if I didn't find this forum and didn't learn about B12 from everyone here. Learning about self-injecting, I feel, literally saved my life. It definitely saved my mental state.

In fact I don't come on here as much as I used to and anxiety is one of my reasons. Everyone here helped me as much as I think I can be helped. And now I'm just trying to figure things out in my own head. I tend to isolate myself to do that. I would say 90% of my issue is from some form of anxiety.

I tell myself not to blame everything that's wrong with me on B12. That one day it could be something different. Regardless of me telling myself that, everything ends up leading back to B12 some way or another. Even the simplest of things could be a B12 symptom.

Good luck. You came to the right place for help.

scnuke profile image
scnuke

It always makes me angry when I hear of physicians that want to reduce or withhold treatments that are helping people feel better, and for no good reason other than they think 3 injections/week is too much. It's ignorant and not a good patient centered practice.

It sounds as if you must take your treatment into your own hands, literally. All the information is here to begin your self-injection routine. 3/week may be your optimal schedule, maybe 5/week, but now you will have the ability to find out for yourself. I am on 2/day. Prior to beginning that I was a mess, physically and mentally. Anxiety, depression, and severe hematologic and iron anemia due to gastric bleeding in addition to PA.

I am lucky that I have a hematologist that writes an Rx for hydroxocobalimin for me and I get it at a local pharmacy. It appears that the shortage is over for now. Prior to that I, like everyone else was ordering from Germany. Cyano is always available from Canada for shipment to USA with no Rx also.

You can do this and it will save your life. Best of luck and don't hesitate to keep us informed of your progress. There are many very smart people on this forum to help you.

Hockey_player profile image
Hockey_player

It is a lot more convenient to self-inject. I suspect it is also less expensive. I live in Canada. My husband does the injections for me. I can buy the B12 over the counter. It costs about $1.30 per dose including the cost of the needles. I have seen on this forum that some people from the US order it from Canada. It is horrible that they are cutting you off. But may be a blessing in disguise since doing it yourself could be less expensive and much easier. It's a half hour drive to my doctor. I am very happy that I do not have to go there for injections. Very best wishes in getting the B12 you need.

mcg-woo profile image
mcg-woo

Hello! Sorry you’ve had a relapse of symptoms. Yes, absolutely if you are stable on an injection schedule and your body is used to a certain amount of b12 in your system and that amount drops, you most certainly can experience a relapse and return of symptoms.

I have experienced this exact issue a few times for different reasons. Once for going off injections entirely. Another time I was cut from weekly injections to every other week when bloodwork showed levels over 2,000.

I also had a return of symptoms after using a multi use vial for several months instead of tossing after 28 days (diminished potency).

Finally, I’ve recently suffered a relapse that occurred as a result of injecting expired Actavis hydroxo due to the shortage of the drug in the US. The reduced potency finally caught up with me.

I ordered Pascoe hydroxo from Germany but felt like it wasn’t working as well as the Actavis hydroxo that I obtain in the US. I went back to weekly injections of cyano but I was still symptomatic so I did a couple of loading doses of the Pascoe hydroxo and that seemed to work but then I was symptomatic again a month later.

My new regimen for now is a weekly cyano and a weekly Pascoe hydroxo. Still not sure if this is going to work or if I will need another pascoe hydroxo shot each week. Super bummed because I was in full remission on weekly Actavis hydroxo injections but now I’m up to 2-3 weekly injections just to keep symptoms at bay.

I hope this helps you!

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