Repairing neurological problems and time scales.

[Steap]

Are there any statistics out there that show how many people have good outcomes once they get neurological symptoms?

I'm still waiting to see a physician after mine hit big style last July without any prescribed treatment.

I'm using oral b12 in a bid to avoid permenant damage but I only seem to be getting worse while I wait for my hospital appointment get here (mid March).

I've had fatigue and confirmed low but untreated b12 deficiency since 2012 (only found out after requesting old blood results from the Gp).

My gp's simply refuse to treat my symptoms with anything but talking therapy and offers of antidepressants. They're a lost cause sadly.

[clivealive Forum Support]

Hi Steap I guess folk who get a complete recovery from their neurological symptoms don't appear "on the radar" any more.

Did you find any record of your Folate level amongst your old test results? I may be that you need to supplement as it gets "used up" processing the B12

I hope you get some benefit from your hospital appointment

[corsair]

hi,about last july i noticed tingling fingers(like the aftermath of nettle stings!) and numb tips. feet not as bad,slight energy loss, slight L'Hermittes symtoms as well,( when bending head forward,feeling of vibration around waist). My up to speed doctor took blood test, and results showed low b 12, and that due to an automimune disorder i was attacking my intrinsic factor needed to process b12. a classic case of pernicious anaemia. this means that b12 taken orally is not processed, the solution is loading doses (every second day) of hydroxocobalamin intermuscular. within few days,energy level better than has been in months, tingling fingers got a little worse(while repairing), 98% better now. L'Hermittes sign gone, now injection every 3 months! p.s you cant ovedose on b12,you need it now! change doctor?

[sirlam]

Hi

I had my loading doses (5) and felt much less tired but there was NO improvement in the neurological stuff. On ‘maintenance’ 2 monthly injections, I developed ‘new’ neuropathy in the form of zero sensation from my bladder. The thought of imminent incontinence focused my mind! I then started to self inject 3 times per week. It took 2+ months to get rid of the 24 hour a day pins and needles in my hands! It was another 2+ months on the same SI dose to get sensation back from my bladder (hip hip hooray!)

I have continued on the high dose regime because my memory is still very patchy - good days and bad days. Similarly my balance and vision. More good days than bad! I still get the numb hand and burning feet situation occasionally, sometimes associated with not feeling well or being especially over-worked!

I hope this is helpful. I have PA so jabs are key for me plus the use of sublinguals when I feel low! Very good luck to you.

[Hidden]

My GP wasn't interested in my low B12 results either so I started to self inject.

The brain fog, dizziness, forgetfulness and tinnitus cleared first. After the first 3 weeks of injecting on alternate days.

The numbness in my fingertips went next.

After a good 4-5 months ( injecting once a week) the pins and needles and numbness in my toes wore off. I've put gel insoles in my she's and boots and they've helped too.

I still have the tiredness and it's just in the last couple of weeks I can detect a slight ( minuscule) improvement.

If your GP won't sanction injections I'd recommend the s.i route. I'd never injected anything in my life but have managed quite well--- watched a couple of YouTube videos and went from there.m

[ACritical]

Hi Steap,

I agree with clivealive, the people who have experienced neurological symptoms and have seen improvements don't appear to visit this site very often. Perhaps like me, they just stopped thinking about what was and get on with what is. I improved really well after a regime of loading injections and there after monthly injections. It took 4-6 month before I all of the sudden realised I went down staircases without hesitation and fear. My migraines improved even quicker. I then did still have migraines, but not very often and they weren't lasting more then a day and were less severe. I managed to cope with 1 Ibuprofen and 2 Paracetamols and watching my diet. The loss of feeling in my left foot and leg up to my knee( you could put a needle in it without me feeling anything at all) has returned.

However, now that I no longer get a monthly injection, changed by my GP practice to one in 3 month, I started to decline in health again. Migraines more often and difficulties with walking, also loss of enthousiasm to do things. I have now found a way to receive extra injections privately and start to feel better again. I haven't plucked up the courage to start self injecting. I had a bad experience buying herbal pills over the internet eventhough they were highly recommended by an article in the Daily Mail( and no. it wasn't an advert) and that has put me right off.

Taking Vtamines orally isn't working for me very much, it can sometimes trigger migraines or ordinary headaches. I wonder what is actually in those pills, they don't come under medicines and therefore perhaps aren't checked as stringently.

Any way, Steap, be patient and be careful in your choice of medication ,it will take quite a while until you gradually improve. I suggest you change your GP, you should have had you loading injections years ago. Also read all the GOOD information and advise here on this site and use it to your own benefit.

[Steap]

Thank you very much. Can I please ask if you had a confirmed diagnosis before you began to self inject?

I didn't have positive antibodies and despite my 2016 private test showing low b12 the Gp test came back at 314ng/l so they pretty much dismissed any notion of a deficiency.

I managed to get my levels up to circa 700pg using sublingual b12 but as I continually read on here testing after supplimenting is pointless.

What I hope for is a prescription and injections under medical supervision but I can't see it happening unless I can't convince the consultant I'm seeing mid March. The Gp did agree to a hospital referral after a spine MRI showed something odd (not directly in the cord though).

The slightly worrying part is the consultant is a general physician who specialises in older people according to the hospital web site and I'm only 45......

I have all my fingers crossed