Still struggling

[Nackapan]

Despite trying to do all the right things am stuck it seems. My main problem is using my eyes!! Causes my skull to tighten and hut. Also sizzling starts in My head. Fatigue is awful. I tried pushing through yesterday but was feeling so ill by 1530 was on the bed again with horrid nausea. Ear regularly go for a short walk. Taking supplements. Only thing on bloods ferritin on the low side 34ug/L typing this difficult. On 2 weekly hydroxocobalamin injections now. All I'm offered are antidepressants! I tried amitriptyline but that put of my system now as didn't suit me at all.

I really don't know what to do next. I'm getting through the days very isolated . Can't read watch TV or manage a shop for long . I did a food shop weekly in dark and a hat as so light sensitive.

Any idea of what time try next appreciated

[cocoa]

Have you ever been referred for neuro physio? They may be able to give you exercises to regain your strength.

When I was really struggling I had help from a clinical psychologist. She advised me on how to avoid fatigue, which I found really useful.

I wish you well .

[Nackapan in reply to cocoa]

No I havent. I will ask My G.p.The neurologist has discharged me even though I still have symptoms with vision and skull sensitivity light ect.

Thank you. Hope you continue to get on okay.

[cocoa in reply to Nackapan]

In my experience you have to ask for everything, which is not easy when you are feeling ill.

[deniseinmilden]

The only way to cure B12 deficiency damage is with enough B12 and supporting supplements to heal the damage. It is important that you get plenty of B12 and anything else that shows up as low in tests, particularly vitamin D, folate, potassium, magnesium and iron. It could be worth getting tested for other vitamin deficiencies and thyroid function too, if you haven't already done so.

The only way you are likely to get enough B12 is by self injecting frequently for months if not forever.

Your "silent" migraines are not typical of B12d but can be a result of nerve damage due to it and, as you don't have any other diagnosis, until you have done a truly long term trial of very frequent B12 injections and supporting supplements, I don't know what else to suggest. You know yourself that the guidelines say for every other day injections until neurological involvement - your headache, etc - is resolved.

I have been doing daily injections for about 4 years now and am still improving.

I am sorry that you are suffering and hope you can manage to get your injections and supporting supplements to help yourself.

[Nackapan in reply to deniseinmilden]

Thankyou. All bloods uo to date. Thyroid okay. Folate and magnesium gone over upper limit on my multivitamin! ! So cutting back a bit. Rewriting the only one I can't seem to raise. Was 61 but last 2 tests were 34. Taking iron will check with gp taking enough as first drive simply maintained on supplements. I've only just reduced b12 injections to 2 weekly as want to see after a 2 week gap what happens. I've read there is something called post trauma vision syndrome which often gets missed. First neurologist thoughts demyelination from b12 defiency. 2nd thought b12 and post concussion . I had a fall 5 weeks prior to 2nd fall that caused virtigo. Only fact on paper from test is low b12. I've got weekly injections booked in as the surgery being very flexible with me . Just cancelled one to see. Thank you for reply. Gkad you are still improving after 4 years.

[Nackapan in reply to Nackapan]

Ferriton (not rewriting) eyesight sorry

[Jackiemary]

Hello Nackapan, I can only say I saw consultant in eye clinic last week and he had no problem agreeing my blurry, hard to focus vision problems were caused by B12 deficiency. I get really hurting scalp too and awful tinnitus. My GP doesn’t seem to get this x

[Nackapan in reply to Jackiemary]

Thanks. I will try and get a referral

I have the same symptoms also I feel as though I can't walk straight but I can. Also makes me shake and hot typing this or trying g to read. What did the consultant say about repair ot treatment?

[Nackapan in reply to Jackiemary]

My G.p looks blank when I describe my symptoms too. Would be interesting to hear the consultants comments on repairs or treatment. Happy Easter