Pins and Needles ...?

[Catsgalour]

Hi Everyone, Advice if you Please ...

After many long years of terrible PA symptoms ...(plus low thyroid untreated for many years) I finally started to SI a couple of months back. Feel so much better already and biggest improvement is balance. Got my bloods done this morning without having to hang on to my husbands arm for the first time in ages .. Wonderful! Funny thing is though I have never had the Pins and Needles tingling in my hands or anywhere until yesterday. Just wondering if this is a sign of me starting to heal .. I am injecting every other day and taking the supplements recommended..?

What a Great site this is Very friendly and Helpful .. Thanks in advance !

Wish all this knowledge had been out there when I was younger but going to make the most of it now and I am 66 next week.. x

[pugdogs10]

Hi....like you I wish all this knowledge had been around years ago (I am 71) but better late than never. A hundred years ago it would have been much worse.

To answer your question I did have numbness/pins and needles before I started on injections and then after I started injections they got much worse for a few weeks and then faded away gradually. The popular opinion is that this is a sign of healing.

I m glad you are feeling so much better and hope your pins & needles soon go.

[LtAngua52 in reply to pugdogs10]

Me too. Had them before but after I started to self inject the painful tingling and pain in legs got worse. A sign of nerve damage being repaired I think. It's slowly fading as pugdogs said, but I've been deficient for at least 15 years and left untreated so some permanent neurological damage is likely.

I hope you continue to improve.

[Catsgalour in reply to LtAngua52]

Thank You for that ... People on here are so kind and helpful! I think I have been deficient for longer than you so what are the long term damages if you know? Awful really isn't it but maybe the newbies on here will never have to have such a hard time of it as us older sufferers!?. Hubby ready to give me my next injection now so must go ...

Take Care Yourself .. xx

[LtAngua52 in reply to Catsgalour]

There is abook by Sally Pacolok and Jeffrey Stuart called 'could it be B12? An epidemic of misdiagnoses.' It's worth a read. In it they do say that the earlier you are treated the more likely your neurological symptoms can be reversed. For some people who have been left untreated for years, treatment may not erase it all. However, they do say that they have known cases where despite the patient suffering from b12 deficiency for years tratment has eradicated all neurological damage, but only when treatment is aggressive. They say it must be methylcobalamin and injected daily in the muscle until symptoms stop improving.

I've suffered for at least 15 years, but only had injections for 5 weeks or so. I still have some symptoms, a little tired with some brain fog, and slight numbness and tingling in my feet especially. My reflexes on the right are not as good. So the earlier you begin injecting aggressively the better.

Have you checked out the b12 websites? You could try b12awareness.org and b12d.org and of course the main pernicious anemia society website for information on symptoms.

I hope you continue to get better and better.

That should be Pacholok

[Catsgalour in reply to pugdogs10]

Thank you so much for Hopeful reply ... I felt like shouting "Whoop Whoop"

I have felt so ill for so long and only another fellow sufferer can understand I think. Yes a Hundred years ago we would have been having vapour's on a couch if we were lucky... ! How the poor coped ... well I guess they didn't and died young? Was told my Great Aunt had to eat Raw Liver so in some ways we are lucky to at least have a stab at being "Normal"

Thank You so much for giving me that Imfo ... Take Care xx

[Gambit62 Administrator]

I had issues with both carpal and tarsal tunnel. A few weeks into treating myself I did notice that some issues with numbness and tingling that I vaguely remembered from about 10+ years earlier resurfaced, having disappeared for many years. The subsided again quite quickly

[Catsgalour in reply to Gambit62]

Hi Again, Really a lot of learning on here for me so don't know what Carpel and Tarsal Tunnel mean ..? Be very grateful if you could explain ...? You seem to know so much and can I also ask you if PA can cause eye problems as I am very blurry in one eye now and it came on very quickly? Thanks xx

[Nathan12345 in reply to Catsgalour]

I have problems with my ulnar nerve whuch started when my low b12 was treated and yes I'm sure pa can cause blurred vision, i find fluorescent lights to be quite blurry, sirens, street lights (xmas lights) and traffic lights too

[Gambit62 Administrator in reply to Catsgalour]

carpal tunnel and tarsal tunnel syndromes are labels for problems caused by constriction of the nerves running through the wrist and the ankle respectively.

[Sleepybunny]

Hi catsgalour,

Good to hear a positive story about someone improving.

Another book you might find interesting "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Other b12 websites

martynhooper.com/

b12deficiency.info/

I found the PAS (Pernicious Anaemia society) helpful and sympathetic.

pernicious-anaemia-society.... 01656 769 717

if you are UK based the following documents may be helpful

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

[Catsgalour in reply to Sleepybunny]

Thanks for that ... Will check them out! XX

[margareta12321]

I had tinnitus numbness heavy legs breathlessness,chronic fatigue and severe brain fog for 6 months which was pu down to menopause.Eventually I lost the feeling in my left leg accompanied with feeling of electric shocks all over body and was taken to hospital.I was kept in for 5 days and seen by a neurologist who found some brain damage and continued. To see me for a year.He said my neurology was all very odd and had several scans and a lumber puncture done.He said he had no idea what was going on.Another 6months passed and I was struggling to get out of bed and had to give my job up.Eventually one doctor noticed my B12 had surprisingly never been checked.She took tests and it was confirmed. That I had pernicious anaemia and my B12 was 79.After 6 months of treatment my symptoms started to subside and I felt much better.They put me onto 3 monthly injections and I thought I was on the mend.After 2 months my symptoms were coming back so I asked for injections two monthly and was told no.I eventually got GP to agree when I pointed out if you have neeurological symptoms you should get jab every 2 months.He agreed I was right