Update

[Nackapan]

I've now seen an eye specialist. The good news is my eyes are healthy . I was worried about optic nerve damage. I do continue to have bad light sensitivity. Sizzling in the head. Difficulty reading books. Watching TV. Weakness and aching legs especially at night. Can't settle on what prescription glasses to wear ad all feel like they clamped to my head and although vision has improved still can make me feel off balance I'm told demyelination seen on mri scan. I dudnt know that posdible. T2 flashes. I'm still on every other day b12 hydroxocobalamin injections and hoping for more repair. I see a neurologist next week. Has anyone had the vision problems? Have they gone for you? Also are there any important questions I mustn't forget to ask neurologist. I think they want to do a spine mri. I'm not keen as struggled with brain one. Do you think they looking for damage there too?

[Cherylclaire Forum Support]

Yes, probably as demyelinisation can be seen on MRI scan.

I have had a brain scan in the past via neurologist, but not a spine MRI as I had no balance problems and no main nerve damage (hands, feet, lower legs were all checked by electrical nerve testing again arranged via neurologist).

"Sizzling in the head" and "difficulty reading books/watching TV" : are these perhaps tinnitus/ white noise and cognitive/ concentration issues ?

The reason I ask is that if your eyes are healthy, could it be that these quite common B12 deficiency symptoms are the problems you are experiencing, Nackapan ?

How long have you been self-injecting? Repair can take a long time. Meanwhile, at least your neurologist is looking for any signs of damage. Best to find out, don't you think ?

Damage to the myelin sheath can repair itself.

[Nackapan in reply to Cherylclaire]

Thanks for your reply. I'm having B12 hydroxocobalamin injections at the surgery. Had one loading dose in November 2018. Them since 31/12 every other day. The reading difficulty is not down to concentration cognitive issues but poor vision and presumably as eyes healthy signals wrong from my brain. The sizzling head is set off by bright lights and noise and fatigue and tv. I think from damaged nerves?? Sensory overload. Will look up white noise as not heard of that thanks. Okay didn't realise demyelination shown on mri. In the report the word not mentioned. Glad myalin sheath can repair itself. .but with b12 help I assume and slowly. .not sure how common these symptoms are with b12 deficiency that's why I posted to see if anyone else has had similar. Just getting rather despondent as 3 steps forward and 2 back it seems. Thank you and hope you are doing okay.

[Cherylclaire Forum Support in reply to Nackapan]

"White noise" is just how some people here describe one of their symptoms; I think to differentiate between tinnitus, as noise related to ears, and that which is inside head. Too much going on, the sensory overload, is a problem for a lot of people, and makes concentration very difficult at times. Crowded rooms, shops, restaurants etc. can be a nightmare, as noises compete with and crowd out each other, bright lights or peripheral movements, especially fast ones, can also cause problems. All of this together can be dizzying and exhausting. Even conversation & TV/ music together can be difficult to zone in/out.

Please don't feel disheartened by this - it can improve. Working out how you as an individual can keep your symptoms at bay takes time. I still haven't been able to work out what causes a bad day, what I did differently - but there are fewer of them and never as bad as they once were. I still want more, and will keep trying for better, even at the risk of disappointment.

I can remember when going around a local supermarket would take hours; trying to focus, remember items and direction of travel, compare items and prices, ignore the movements and sounds around me, getting slower and more dizzy as I went, getting home and unpacking it all, then flinging myself exhausted straight onto the sofa and sleeping for 3 or 4 hours. This no longer happens. I can shop now.

This condition is not exactly the same one for any of us, but there are certain people here that will have similar symptoms and can share what worked for them. For me, it certainly made a difference when I started injecting every other day, and when I upped my folate and ferritin levels with supplements (even though diet rich in both, levels previously very low range). The improvements were slow to start and gradual, so difficult to notice. Worth keeping records of symptoms for this reason alone.

Keep trying, keep in touch. Very glad you have no eye damage, Nackapan , have you seen neurologist yet ?

[Nackapan in reply to Cherylclaire]

Thank you. Ypur comments all so familiar. I went into a small supermarket after my injection today. I was very unsteady but didn't think I would fall. I found the tin aisle very difficult. Anyhow I managed to get 6 items , not fall and a short drive . And yes had to go on the bed for a couple of hous. But an achievement. I can't work out why some days so much worse. I'm on bed 10-12 hoursine a vast improvement. Still fell pretty isolated though. I see a neurologist on Wednesday after my next b12 injection. Optician tomorrow for yet different glasses as still not settled on a pair I actually want to put on . The eye doctor said to get some dark tinted ones that might help me with the light sensitivity from artificial lights. Morrisons have an hour when they calm everything down for autistic people. A good time to go as darker and quieter. My ferriton leveks dropped from 61 to 39 in a month and although in range I've just come off the phone to Gp. Was taking iron but he said to take more as might help tinnitus /white noise and thudding heart at times. Hope so! !! I do keep a diary as when I feel poorly or frustrated I look back and realise mostly not as bad as bad before. Thank you for kind words and encouragement . I wish you well .

[Cherylclaire Forum Support in reply to Nackapan]

The thudding heart is quite disturbing sometimes- mine is usually at night and it has scared me into restricting my coffee intake. GP once told me she thought it was driven by anxiety, but more often than not, it is after I've fallen asleep and wakes me up with a jump as if I've heard a sudden loud noise (but haven't), so doesn't seem to me connected with anxious thoughts. I could be wrong- very hard to tell.

I even record when this happens to see if related to stressful periods of my life.

I'd also record how many hours' sleep you have (counting naps)- because this is an easy way to check improvement.

Difficult when you are tired to bother with all this, I know, but may help you recognise gradual easing of symptoms, jog your memory at consultations, help others to see what you are coping with (if you care to show them). You may run the risk of GPs/others thinking you are slightly obsessive, but may be lucky and get a consultant that recognises these symptoms- or better, can pick up on a pattern that went unnoticed !

Hope yesterday's neurologist appointment went well.

[Nackapan in reply to Cherylclaire]

Thanks. I've posted about the consultation. I've stopped drinking coffee since been ill.5 months Zero alcohol. Only recently fancied a bit of chocolate. My thudding heart seems to have lessoned since ferrous sulphate taken. Perhaps it was the lower ferriton levels ? If the sizzling in my head is a migrain it seemingly is continuous yes I do record everything. I know when I've had a better day as I've not done it until the day after!