Pernicious Anaemia Society
14,241 members10,199 posts

Grumpy and Happy after GP appointment

Just back from GP:

Grumpy bit first :

Finally, after 14 weeks, this from neurology:

MRI brain scan results: "There are scattered patches of white matter T2 high signal. The extent of this microangiopathic change is not excessive for age."

.....otherwise normal. Well that's good...... or is it ?

This bit bothered me "...not excessive for age." Why ? Because haematology said the same thing about my raised MMA levels. I'm 59. I looked it up: in all the research I could find, raised MMA levels can be normal "in the elderly ". Like I said; I'm 59.

Since I don't want to be 80 before I've been 60, if anyone can put my mind at rest (or otherwise) I would be very grateful. Either way, I need to know what's going on, and this guy has already told me that he doesn't know much about B12 deficiency, so I'd rather hear from someone who does.

I'm not having a particularly good day today, but it's been a long wait and I'm tired.

This bit is Happy:

GP said that she'd talked to the nurse and she can't help me with the injections, so I told her that I was doing them myself anyway. She was fine about it, even once I told her the frequency (every other day) and she even said I was looking better. Glad I told her !

5 Replies
oldestnewest

Hi Cherylclaire. Microangiopathic change (small vessel disease) does occur as the brain ages - it's quite common. I had an MRI when I was 59 and these changes were present - the neurologist also said it was consistent with age and nothing to worry about 😉.

The neurologist also said that by the time we die, most people have these changes, to a greater or lesser extent, without having any symptoms or ill effects (as found in post mortem studies - apparently).

It's not something I'm worried about.

MRI scans are very sensitive and show up the smallest of changes, so if there was anything significant going on, , it would have showed up on the scan.

Pleased that you were able to tell your GP that your now self-injecting...and the frequency at which you inject.

It's a bit of a shame that having seen all the guidelines and evidence you gave her, that she's not able to make the connection between getting enough B12 and starting to get well 😉.

And oh what a shame that the nurse is not able to help you. Wonder why she thinks this?

On the plus side, at least your GP is on board with what you're doing 😀.

Also really pleased to hear that the right amount of B12 is starting to make a difference...just think how you might be feeling several months down the road. Hurrah.

Well done for persevering with this...it's been a long tough road...it can only get better from here.

Take care x

5 likes
Reply

Thanks Foggyme for the reassurance.... I think I've lost a little faith in the experts lately and needed confirmation from someone I trust.

Also I was convinced that something would show up since I have poor concentration powers, am easily distracted even by small things like light reflections on a shiny surface (my dog-brain), sometimes cannot make any literal sense of what I'm being told because I'm selecting the wrong interpretation for one of the key words, and then of course the usual mood swings, impatience, irritability and a need for solitude (perhaps because I'm finding all of this effort to understand very tiring).

This all seems like it should have a physical manifestation somewhere- even if only to safeguard me from being misdiagnosed with depression or hypochondria.

It has been a whole lot worse than this at times, and I would far rather stick long needles into my legs forever than go back there again. If I hadn't found out that all of this (and more) was happening to so many of us, I would never have got to this stage of recovery alone. I have you (and many others) to thank for the support that got me here.

[Having said that, I missed my injection yesterday just when I probably needed it most, and have regressed a bit and started shedding again : proof enough for me.]

Yes: good about my GP, shame about the nurse. From what the GP told me, I gather that the nurse's concerns are legal ones. I must confess I did once shout at her, so perhaps she's still nursing a grudge ? (that one's for clivealive )

1 like
Reply

Hmmm...I'd be interested to hear exactly what these legal concerns are...with evidence.

No such concerns where self-injection for diabetics is concerned!

Physical manifestation? B12 deficiency - and thank goodness this hasn't extended to evidence of demyelination on the MRI (Subacute Degeneration of the Spinal Cord).

Reply

Please ensure that you have a healthy level of Folate when you start your SI B12 injections Cherylclaire

2 likes
Reply

I'm taking one folic acid tablet a day- 40mcg (?) I think.

Also a mutivitamin and mineral supplement - a huge capsule that smells like something has crawled into the container and died (so can only stomach one every other day). Plus I think it's attracting flies; I'm serious- I had four of them in my living room yesterday !

Reply

You may also like...