I have been injecting B12 twice a week or so 1ml or 0.3ml. There has been improvements, my question is does anyone have any suggestions for the numbness and cramping in my hands, other than Gabapentin?
Also, how long does it generally take for full or near recovery.
I was on proton pump inhibitors, antacids and gas medicine for awhile, that’s how I developed my B12 deficiency.
Thank you all in advance for your time and patience.
God Bless.
Timeliness very different for everyone depending on how long deficient. How many symptoms. Getting as well as possible and finding the right maintenence b12 and other vits and minerals. .
Hopefully as you know the cause you will soon be b12 replete abd keep it that way.
Ibobrufen gel may help your hands for pain relief to keep them moving .??
Hang massage with oils.
Special cutlery
Finger supports.
Hand pysio
Vit D?
Hooe you get improvements soon
Been in your shoes. But was not on proton pump inhibitors. It took me 1.5 years of daily eod injections. Now I am back to exercising and being very active.
Hang in there!!!!!!!!! Just be Patient.
My foot and hand were numb, heart palpitations, severe fatigue and brain fog. So scary. Beware that as you do the injections your nerve cells will all come alive at once and you will feel pain radiate all over your body. For me it lasted 1.5 months, but I didn’t stop the injections. Then all that subsided. I believe when they say that as you do injections it will get worse before it gets better, this is what they meant.
B12Life Forgive my ignorance here, new to all this what is EOD, injections?
EOD usually means "every other day".
I am choosing to do eod. I think that may work best for me. The whole nerve waking up thing was a doosy. Still dealing with it but I think things are getting used to being alive again and calming down. Good luck RisingOne your going to feel so much better soon.
EOD vs daily will also depend on the type of B12 you are using. A simplified explanation is that there are 3, but I'll explain 2 of those three here that are used most. Others can ellaborate on this and the 3rd type that I leave out.
1- hydroxocobalomine - more bioavailable thus theoretically should only need EOD
2 - cyanocobalamin - synthetic and not as bioavailable (meaning not as effeciently absorbed) and thus may require more frequent injections.
I think that everyone responds differently. I'm in the US so Hydroxo was harder to get but still was able to get it. However, I think because I started with Cyano I got used to it. I tried both and ended up going back to the Cyano because I seemed to just have more consistent response to it; again, that doesn't mean others will. So in the end, you have to just try and figure out through trial and error what works. Since Hydroxo is more bioavailable and more available in Europe I would say that would be the one to try. That being said I've never tried the methyl version so others can elaborate on that.
And... there are no dumb questions here. I too was overwhelmed by the terminology,, so ask away. this forum saved my life literally!!!!
Thank you for your patience and understanding. Here in the states I use the methylcobalamin, 1 ml, once or twice a week. I started injecting on Nov. 8th, 2021, prior I was using pills, tablets, B12 strips (from Amazon), liquids, patches and anything else to no avail, hence B12, injections. The more I learn from people like yourself, the more encouraged I am. I also have the numbing in my hands, difficulty walking and fatigue easily, unfortunately, I informed my Doctor, about PA, has he did not have a lot of info. I showed and told him about all my symptoms, finally he agreed! I had all the tests, MMA, Homocysteine, etc. Thank God, I stumbled upon this sight which has been a true blessing and help, especially from folks like you, THANK YOU, again.
Being from the US, like me, so you order your b12 from Canada? I just ordered mine. I am afraid to continue use of the other powder form because of contamination, so I will be going back to cyanocobalamin. That's what my doc started with. I guess I'll just wait and see how my symptoms go and inject accordingly. Thank you so much. I'm sure this forum did save your life. It has definitely been a life line for me. Verifying that the docs, just don't know much about it and follow strict rules and guidelines, but here you guys tell it like it is. Validating, how I felt. Thanks
Yes. But all they have is cyano. But it has been what I used 90% of the time. So once i got a doc to give me Self injections (SI) and teach me properly. I started just ordering from Canada just as a back up. then I gave up on the hastle of renewal via docs.
I get my needles there too. canadadrugsuperstore.com/
Also, Message me directly, I would love to talk over the phone and support you through your journey if you want.
Cyano is just fine. Thank you. My dog is diabetic so I buy syringes for him and use them. My order just shipped today so I'm excited to get single use ampules. I think my doc would want to give me 1 a day injections but the insurance won't. So I don't even want the hassle. I'm so glad I found this forum. Thank you, I will message you.
Not sure if it is frowned on here but I do the 30 ml biles and use them for a month or two. I follow sterilization protocols closely. I confirmed with some medical professionals and also realized my father as a diabetic used multi dose vials for 45 years.
Right, and I give my dog insulin 2x a day from a multi use vile for 5 years and no problems. I use strict safety as well. Just got a bit nervous. Even the pharmacist stressed safety and contamination concerns several times. But I have $300 worth of b12 I'm afraid to use. 😔
Posture can help by making sure that nerves are as free as they can be in travelling through potential pinch points - such as wrist , neck and shoulder. A physio might also be able to help with exercises that would strengthen muscles and help strengthen muscles to support good posture.
Numbness and Pain.... In my case, although they were a result of nerve damage from my PA they were two different triggers. In 2020 before I was finally diagnosed with PA the entire right side of my body went completely numb from the top of my head to my right foot. They first thought I'd had a stroke but later turned out to be PA. I could not walk was bedridden for 16 hours a day and in excruciating pain. My recovery for both numbness and pain to different paths. I went to University as they wanted to increase my blood flow to my extremities to help with nerve healing. To do that they tested me for Gluten and Dairy sensitivities. I was not allowed to eat any wheat/gluten for the day prior to the test. The day of the test they checked my blood flow in my legs and arms with ultrasound and told me I had strong blood flow. Then they told me to eat a piece of wheat bread which I dutifully did. then they tested again with Ultrasound and found blood flow greatly diminished. They said I was definitely sensitive to Gluten and same with dairy as they ran that test also. I do know this sounds like magic and all of us are different but... I stopped 100% Gluten, Dairy, Sugar, Caffeine immediately and no more pain. It magically disappeared. The severe numbness remained but pain was gone. They explained the reason was that the Myelin sheath protecting the nerves was damaged by severely low B12 and thus nerve my nerves were damaged. So there are Mast Cells, trillions of them throughout your body that release histamine when you have a sensitivity. The firing of histamine by these mast cells is normally very localized like when you have a bee sting or a splinter they fire and open up a gap in your veins to red and white blood cells can surround the injury thus the red puffiness around a splinter. In the case of a food sensitivity all your mast cells are firing histamine at the same time and many of those mast cells abut right next to a now damaged nerve... that histamine and damaged nerve combination is what was causing my severe pain. So the nerve damage was not healed but the pain stopped For me anyway. Recommend you just try zero, absolutely zero Gluten, Dairy, Sugar, those are the three most inflammatory foods. See what happens who knows it may work for you.
On the numbness side It took me a year and a half of very slow improvement, although I do have some residual numbness in my right foot and right hand. I am now able to walk again and was even able to get rid of my handicap placard. Also, to never take for granted the simple and wonderful ability to walk I've taken up hiking for the first time in my life at 63 and love it. See
Sorry for writing a book but thought maybe it will help. Just remember there is HOPE so hang in there!
Good luck!
It helps to read these short little "books" to know other people have gone through what you're going through and even more, and to know how far you've come from that place is very encouraging. I'm so sorry you suffered so much. In difficult cases like yours often doctors make you feel pretty crazy in the head, because they don't know what's wrong with you and therefore it's all in your head. So not only do we deal with the physical medical issues, but also it becomes a deep mental issue questioning yourself, questioning doctors, questioning everything! You become defined by this. Your life becomes a survival game, trying to help yourself. Not to mention all the other daily life challenges we all face, that become harder. And then the confusion and the brain fog that comes with it just adds to it mentally. It's a very crazy deficiency to have. It surprises me around every corner. But it's also so great to know that these things that plagued you for decades are real and they can be treated and there is hope. I know I suffered for more than 25 years and maybe even 35 years and so have others. And to get your life back at such a late stage, you wonder what you could have done with your life all those years. But all you can do is move on from here and live your life the best you can for as long as you can. You have to forget all those Wasted Years. All those terrible painful mentally difficult and physically difficult years, lost relationships, jobs, friends, Etc.
Ps, sugar and gluten and everything you gave up are very difficult habits to break. Good for you! Thanks for your story. It helps.
EllaNore, Amen to that. I now triple check everything my doctors tell me. In fact I think I know more about this disease than they do...now that is terrifying! But all of us can drive our doctors treatment with the proper research and presentation to them. I am now being looked after by some pretty good doctors that listen...there are a few out there that don't let the ego get in the way. I do know now that I look back that my symptoms started at least 10 years prior to my diagnosis...they just came on so slowly I just got used to them until finally they became catastrophic. But it sort of taught me a much needed lesson, life is wonderful and to live it however it is presented to us!
Giving up the gluten, dairy, sugar was difficult as so many things have gluten it really opened my eyes. BUT I think I cheated on this new diet as I was heavily incentivized. If I ate gluten or dairy that terrible pain would return within the hour. Would be a great diet pill huh...eat poorly and you feel pain! 🤣
So glad you found a good team of docs. I have finally found some too. It does come on SLOWLY. I too got used to it all, until one day it all came to a head and wham! But I now have answers for everything that was wrong. That is a relief. Yup once you can get back to life, living is all I want to do. Travel, camp, hike, just being in nature. I can't wait. I miss my motorcycle and I miss being in nature. I did make my yard a nature haven for myself so I could at least sit in my garden and heal. Have a wonderful day.
Have you had your potassium levels checked?
Low potassium causes a type of cramp in your hands called "clawing".
Potassium is vital in nerve transmission so if your levels are low it can cause numbness because the nerves cannot transmit their signals.
If you can, get your folate, magnesium, iron and vitamin D levels checked as well, while you are about it.
Thanks for the info.
Tingling, numbness and weakness in both legs
B12 pills ? Numbness in face after ? Normal ? 
Numbness - please help! 
B12 Tingling and Numbness
