Reassurance needed please: I'm in a... - Pernicious Anaemi...

Pernicious Anaemia Society

32,673 members24,070 posts

Reassurance needed please

Nackapan profile image
3 Replies

I'm in a different gear now . Not what I was expecting. Had first lot of Nhs loading doses of vit B . Finished 1o days ago. Initially I got worse , housebound with more neurological symptoms. Balance issues . One near collapse then couldnthe get uo stairs. Bad headaches that lasted whole days. Rash on face neck lips and still appearing.Then although still very hard to balance to walk. Headache free for 2 days. So on no drugs now for pain. Now have extreme fatigue and weakness completely numb. No motivation. Very odd for me. I'm 9 weeks now stuck in house apart from the can journeys I had to get injections.

Has anyone gone through this stage??

I dont know whether to push to walk more or do mild vestibular pysio or just to 'rest'

Last time tried to push through by walking around the house on jelly legs trying to ignore the weakness I think you must get from inactivity it didn't pay off as took me back nearly to the beginning of collapse and vertigo.

Does this ring any chords with anyone please. I'm starting to feel anxious. I'm not an anxious person very patient and methodical. Also trying to do all the right things to improve. Taking vit c 400 folic acid vit D

Thanks in advance of any thoughts

Written by
Nackapan profile image
Nackapan
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Linda730 profile image
Linda730

Hi Nackapan, to tell you the truth, everything you're experiencing can be called normal...for you. I live in the US, where we seem to be even worse off than the UK. I've been getting shots for over 20 years, yet at one point I was showing signs of dementia because I stopped my shots thinking they weren't doing any good. Turns out I wasn't getting enough. I now SI once a week, but am injecting more if needed. And I still suffer from various symptoms. Hopefully you will weather this period and see improvement soon.

Don't push too hard...this is forever, so take it slowly.

Nackapan profile image
Nackapan in reply toLinda730

Okay. I'm bedbound now so am taking it slowly thanks. I'm not expecting a quick fix just some improvement.

Sounds like you have been through the ringer.

Thank you

Miss-guineapig profile image
Miss-guineapig

Yes, all normal from my early experience, although everyone has their own symptoms a lot of what you are saying is similar to different degrees. Balance and strange unsteady gait was very bad for me, that has now all gone. Just hang in there, and take all your meds, it's an ongoing challenge but gradually things do improved to a good level (for me anyway), but good and bad days continue a year on but I now cope very well. . Wishing you good health Nackpan xx

Not what you're looking for?

You may also like...

Numbness - please help!

I was diagnosed B12D, surviving on starvation rations from NHS for a few years, got really sick...
MrsTuft profile image

Needing support please

Hi I’m not great . Iv noticed the last couple of days feeling very anxious . I dint know why . The...
Andypandy30 profile image

Gp, sc, drugs.

Been to my Gp. Quite confusing. Said about not absorbing b12 tablets. She thought my b12...
Nackapan profile image

Snakes and Ladders

I've started a new regime of 10 day injections. Sc... sc... IM. I used to get a headache after...
Nackapan profile image

Advice please

Hi I have had 4 b12 injections in the last month but it has now been changed from weekly to once...
Andypandy30 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.