PA - Fatigue

[Debbiscott16]

Heillo can I control my injections?

I had my first injection 13 days ago and the fatigue is back!! I don't have another injection until July.

Please can someone advise.

Thank you 😊

[holehead]

Hi

I am assuming that you are getting your injections from your gp if so then your injections need to be more frequent and with any neurological symptoms should continue until they stop. Please take a look at the nice guidelines they are available on this forum and take them along to your gp for support.

Mark

[clivealive Forum Support]

Hi Debbiscott16 as holehead says you really do need to go back to your doctor for more frequent injections if you are having neurological symptoms.

Have you actually been diagnosed with PA or are you being treated for the subacute combined degeneration of the spinal cord?

Also check to see if your Iron and Folate levels are OK as the three work together.

I wish you well

[Debbiscott16 in reply to clivealive]

Thank you . I am seeing my Dr on 15 May!! Made the appt about a month ago couldn't see him before. You know what it's like!

I have seen a Dr who give me a script for injections but it seems to me Doctors don't know much about PA or treat it like "whatever". So is it not that important? ? More unpleasant. But when I first put Pernicious in google the meaning of the word it's self is nasty!! So surely that says it all!!!

Take care.

[clivealive Forum Support in reply to Debbiscott16]

Pernicious means "fatal" as my doctor told me in 1972 and going on to give me two years to live - unless I ate raw liver three times a day - or had B12 injections.

Much as I love cooked liver & bacon I opted for the injections and I'm still "clivealive" at 75

[Debbiscott16]

Hahaha I have read that people used to die from PA. But I am very pleased to hear that you have managed to not eat Liver as I am a vegetarian lol. My sister joked that I would have to eat raw liver, wait till I tell her!!

Yes when I did eat meat I liked liver and crispy bacon 🥓. But there is no way I could eat it raw either lol.

Like your handle!

Debbi

PS and that you are still with us

[JMN2017]

As you are vegetarian, is this the reason for needing B12 or have you tested +ve for antibodies to IF (Intrinsic Factor)? If the former, I would have thought that, once you have had your loading doses, ie alt days till no further improvement re neurology, you might be OK with taking a Vit B12 suppliment orally.

If you have absorption issues, then clearly you will need to continue with injections for life, unless a cause for not absorbing can be identified and removed, ie particular medications can cause absorption issues.

Yuck, I couldn't eat raw liver either!!!

[Debbiscott16 in reply to JMN2017]

JMN2017 Thank you I have since seen my own Doctor after a 6 week wait! I told him what the neurologist said about having an injection every week for 6 weeks but he has said it is unclear and has written to the neurologist to clarify the instructions.

Can the fatigue be that bad that I can literally fall asleep while standing up and have the stop myself from falling over! Can this really be right?

[Debbiscott16]

Hello

My neurologist has suggested I have injections every 4 weeks. But now I find my fatigue has worsened. I sleep several hours a day and then sleep a good night's sleep too.

But the problem is the near the injection gets I am literally falling asleep on my feet and having to stop myself from falling.

But my B12 blood test is coming back normal. Is this normal? How did I manage without the injections?

Please can you advise me?