Neuropathy again (sorry)

[Caro44]

If the nerve damage can't be fixed after 6 months, has anyone who had this happen to them seen any degree of relief? Did the pain decrease at all or once the damage is done to the nerves, it's done? Thank you all again and again

[clivealive Forum Support]

Hi Caro44 I fear you worry too much about what things might or might not happen in the future which sadly no-one can possibly forecast.

It may well be that not all neurological damage will be completely repaired but then again it might - who knows?

I think it best to concentrate on those that do improve and rejoice in them.

I remember walking around like a Zombie 45 years ago and I guess I've just come to live with any damage that wasn't repairable (numb thighs for one, tinnitus for another) but whatever they are they are far les onerous that being a Zombie.

Cheer up - you are on the road..... and I wish you well

[Caro44 in reply to clivealive]

Thank you. I just realized it hasn't been a10-11 months my nerves were damaged. It has been 25 years atleast, probably longer. But it rapidly got much. much worse in the last 10-11 months. Since I already had the damage, this is even further damage and no matter how much much b12 I do, I do not think there will be any recovery to my nerves at all. Because the degree of damage is so high at this point. It is small fiber neuropathy, so no motor neuropathy which is the one that usually gets better with treatment. I am in such despair. I had the shots at home, too. I just didn't know to do them. I tried them and they made my anxiety worse. Didn't know that things were worse when you first do them. I am just beside myself.I can not live with this degree of pain. If it lessens I will be ok, but by now, my nerves are totally fried. Severe pain in my feet and calves 24/7. Prior to loading doses, I would say it was 22-23/7. I had a bit of relief occasionally. Do you think I should do the loading doses everyday if my b12 is so low? Or that will not help. I do take your point about anxiety but it is out of control. Has been that way for a year, and very bad for my entire life, really. I just do not think there is any hope to be had for me after all this time and all this damage. I so appreciate the replies I get. Thank you for your time.

[Penni]

My nerve damage was caused just over 2 years ago and it has not improved. I now have almost no feeling in both my feet and limited feeling in both hands and lower legs. As I also have damage too my spine caused by the lack of b12, I have alot of problems standing for more than a few minuets, going up or down the stairs and carrying out basic household tasks. I'm now taking very strong painkillers, more than likely for the rest of my life. As I cannot feel my feet I'm no longer allowed too drive but did manage too get the GP to sign a free disabled bus pass for me due too medical grounds.

[Caro44 in reply to Penni]

I am so sorry that you are going thru this. Has your nerve damage progressed or was this bad when you started the b12 regime? Does that mean your nerves are dead if they are numb? My toes go numb and I get zaps and pins and needle pain in my legs. At one point last year i had them all over my body. Not sure why they went away, I gather they will come back. Thank you for your response. Do you do the injections every other day? Maybe the nerves will respond one day. I surely hope they do. Take care.

[Penni]

I lost the feeling in part of my left foot 11 years ago after having something heavy dropped onto my foot. Over the years I started having problems with my back, this was put down too carrying heavy bar trays and having a larger chest than most women. When I was expecting my daughter 8 yrs ago my right leg below the knee lost all feeling. This was treated as DVT and I was put on a daily course of very heavy duty anti-clotting injections. These were very painful and could have been very dangerous as there was no clot and I ended up with very large and dark pruple and blue bruises all over. The feeling returned after I'd had my daughter. 5 years ago when my b12 injectios were stopped I was fine, apart from on-going issues with my back. The weeks leading upto my hospital stay were vile!! I felt so ill and was becomming more unsteady on my feet. They were so painful that I couldn't have anything touching them or wear slippers or socks.

I can now wear socks but only the very soft/fluffly type, slipper boots no novelty or mule slippers and either trainers or ugg type boots as my feet now swell if I do too much walking. I have too walk with a stick or even use a wheelchair if going on a day out. A far cry from working 12-14 hour days constantly on my feet

As reguarding my b12 injections I have 1ml ampule every 6-8 weeks and 5mg folic acid daily as well as my "happy pill". If I wanted too increase my b12 injections I could but too be honest it doesn't make any difference with my nerve damage if I have them more often or not.

[clivealive Forum Support]

Your two stories Caro44 and Penni just underline the importance and urgency for this community to "educate" the medical profession in the way it should be treating B12 Deficiency and P.A.

Every time we read of a success of someone getting the treatment they need is a battle won in the war against ignorance, but sadly there are still those of us that get injured along the way.

My heart goes out to you both.

[Caro44 in reply to clivealive]

My alternative dr wants me to keep up with the B12. He thinks it will help my symptoms. Not sure about the neuropathy of course!