Cherylclaire update on progress - Pernicious Anaemi...

Pernicious Anaemia Society

26,567 members18,465 posts

Cherylclaire update on progress

Cherylclaire profile image
CherylclaireForum Support

well, I'm now on 5th loading injection of 6, and slight improvement (bit up & down)- which is disappointing because this is my second chance due to behaviour problems: 2nd set of loading injections hoping to sort out problems. Starting to think expecting to get back to myself a bit optimistic. It does not help when:

Tooth pulled last week, gum then needed stitches as not healing up

Broken arm mended but restricted strength and movement- MRI scan needed for likely torn rotator cuff it just me, this inability to heal properly?

6 Replies
clivealive profile image
clivealiveForum Support

Wow Cherylclaire you have been in the wars. What is your diagnosis, P.A. or B12 Deficiency?

It is not uncommon for symptoms to appear to get worse before they get better, but if for nothing else, it indicates that the B12 you are having injected is actually working to repair the damage done to your nervous system. It is not an overnight magic cure and it will take time and please don't worry over much at this stage.

Do you know what your Folate level is as this is essential to process the B12?

Hopefully you will see sign of improvement soon and I wish you well for the future.

Cherylclaire profile image
CherylclaireForum Support in reply to clivealive

Hi Clivealive- always glad to hear from you. I was having a down day yesterday, and now feeling more positive today...maybe the magic's starting to happen? (Could be just another mood-swing!) However, went to physio this morning and some progress made with broken arm, so just need to be more patient with rate of muscle repair. MRI scan on 30th (yes, a Sunday!) will decide next step.

The Dr has spoken to haematologist about me- hence 2nd set of loading injections, then I believe am now on 8 wk instead of 12. Also awaiting blood test results (taken before loading set)- so MIGHT get her to say the P word eventually! So far, no conclusive diagnosis given.

Am in the library, and haven't got my previous test results with me but have recently been put on tablets- ferrous sulphate & folate- which will help. Will this help with retention? I really hope so, as all seems to have gone pear-shaped lately with Arnika Apotheke - always comforting to know it was there as a last-resort option should all else fail.

Link to one of your old posts

During your recent medical/dental procedures was nitrous oxide used?

I wondered if you have had platelet levels checked recently? This would be part of a full blood count (FBC).

I am not a medic just a patient who has struggled to get a diagnosis.

Cherylclaire profile image
CherylclaireForum Support

Thanks for your thoughtfulness, Sleepybunny.

No, I have discussed B12 deficiency with dentist, so she is aware of nitrous oxide problem and it is on records. No surgery (at least, so far) on broken arm- only x-rays to check bone healing .

I've had a few FBCs done and see nothing to worry about concerning platelets -can't recall figures- am in the library right now (SHUSH!)

Dr has put me on a course of ferrous sulphate and folate tablets along with the 6 loading injections of B12, and has spoken to haematologist, taken some blood tests prior to new course of injections, and is sending me to St Thomas' gastroenterology dept. so progress is being made. Seeing her to talk about blood test results, and improvements from loading course, on 25th.

Your advice and suggestions are always welcome.

clivealive profile image
clivealiveForum Support in reply to Cherylclaire

Are you still awaiting confirmation of whether you are B12 Deficient or have P.A?

Glad to read that you are getting the attention you need.

Cherylclaire profile image
CherylclaireForum Support

Hi clivealive-

Just before starting this 2nd lot of 6x loading injections (now completed), had 2 blood samples taken for:

"Autoantibody screen (inc. ANA), gastric parietal Ab & MMA levels. reason: B12def. neuropathy.

Bone profile, folate, vit. D. reason: hair loss, lethargy, low B12."

I'm hoping something here may explain why 3-monthly injections were too far apart for me to cope, and whether I can get back my brain which is better than previously- but not right yet! I'm seeing Dr on Tuesday, so will let you know how it goes. Let me know if you think of anything that I should be asking for, other than a diagnosis of course.

Also hopefully having stitches removed from gum on Monday, MRI scan on broken arm on 30th Oct and Gastroenterology at St Thomas' on 15th Nov. Can't say they're not trying hard to mend me!

Lovely as ever to hear from you. This all sounds a bit like a joke to most people, you can see why though.

You may also like...