I'd like to share my story and ask if anyone else has experienced a rapid response to B12 injections.
I started developing neuralgia and mild walking issues the beginning of December last year, and within 5 weeks I needed a walker and had numbness and pain from my feet and hands all the way up to my face. I also developed ataxia and muscle weakness.
Because this developed so fast, my sister took me to the ER of a large out of state hospital with an excellent neurology department. They admitted me right away, and within 3 days diagnosed me with pernicious anemia and immediately started injections. By the third day of injections, I started experiencing some small, but noticeable improvements.
I was sent home, with daily B12 oral supplements, but only weekly cyanocobalamin injections. Within 4 days after my last injection at the hospital, I had deteriorated to worse than I was when I was admitted there. My stomach muscles had stopped working. When laying on my back, I could only raise my head and couldn't use my stomach muscles to sit up at all, and I couldn't lift my legs up off the bed. I was freaking out!
Couple days later, I finally got to my PCP for my first injection. Later, I was extremely surprised to find that I had huge improvements within 5 hours after the shot (jab). I could sit up all the way, lift my legs all the way up off the bed, and walk fairly safely without the walker (though slowly and with a wide gait). My ataxia was significantly reduced, but my muscles still felt very weak and I tired extremely easily. Numbness was still in full force.
A couple hours later, my feet and other areas that had become numb started burning more fiercely with intense pins and needles, like they were trying to come awake.
The next morning, I could still lift my legs all the way, but I could only half sit up. Needed a walker again to be safe, but my ataxia was still partly improved. The intense burning and pain was reduced. But by early afternoon, I couldn't sit up at all again and couldn't lift my legs. And nearly full ataxia had returned and I was still numb.
My PCP refused to increase the number of injections each week, but she agreed to let me take one more injection just this week, as the hospital had not completed their normal 5 day loading doses, due to the pandemic overloading their capacity.
I'm able to self inject weekly at home now. And I experienced the same amazing response about three hours after this last injection. This time, I also had some more energy and could actually sit up in a chair for a couple hours. I was able to prepare a small meal and slowly walk around my house without my walker, but I did suddenly crash by 8 pm with severe exhaustion, brain fog, and weakness. And a few hours later, I again experienced intense burning and sharp pains in my most numb areas.
I'm also sleeping nearly 12 hours a day after these injections, when my normal is 7 hours. Guess my body needs lots of rest for healing.
I'm desperate to start regular daily injections, so I don't keep regressing in between. Fortunately, after I phoned around, my functional medicine doctor has agreed to prescribe them for me, starting next week. I feel so blessed!!
I'm under the impression that it is extremely unusual for anyone to experience such a rapid response to the injections. It certainly startled me! I think it might partly be due to starting treatment just 5 weeks after the very first sign of neuralgia. I also did a quick internet search, and discovered a few published documented cases of similar fast responses to B12 injections for neurological symptoms (mostly, but not always, to early diagnosed cases).
I have no idea how long before I can achieve full recovery - except maybe for the almost completely numb soles of my feet. My nerve conduction test showed absolutely no response in that area, but all the other nerves seemed normal.
Has anyone else had a similar experience?
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Gardenswithwings
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So glad to hrR this. Hoping you vintinue to improve day by day. Fir me one I got walking again I think I pushed too hard so try and stop before you crash.
Slowly slowly is the way.
I knew I wax improving as get more irritated and frustrated at not finishing things .
A small meal I an amazing feeling.
For some reason that made my family laugh wax the fist thi I achieved whilst stsdibg was to clean my bedroom window!
They didn't really get how important that was but I'd never asked them as they were doing enough.
Yes, I'm slowly learning how much I can do before crashing. It's very frustrating how little that often is, but I'm so happy that I'm now improving a little bit each day. So I'm trying to be kind to my body and not push it too much.
I'm in the U.S. I was concerned that I would develop some permanent nerve damage, and really scared how fast symptoms were developing. My neurologist (who I have fired) kept postponing follow up visits for weeks or months, no matter how fast I was deteriorating. Hence, the visit to the ER.
Welcome to the website.
Good to hear you are having regular injections.
It can take a several months to improve, and sleeping and resting will aid in recovery. At first dont push your self too much, as many on here have found you later crash and feel exhausted. LIsten to your body and take things slowly.... best to use your Walker for balance, (I would hate to think that now on treatment and recovering you fell ) Its very frustrating and your brain will want to do more.... but the body needs to recover and likely to rebel
I too had a very quick reaction to B12. It was like a miracle. But my neurologist told me that this is normal. That the body starts using B12 to repair itself immediately. But I take oral B12. I need to have a constant supply or I start getting minor symptoms back ( problems with spelling and balance). And exercise makes it worse. For example after a 6 miles walk last month I started stumbling. But a couple of hours after taking oral b12 I was OK. As others on this forum have mentioned no two cases of B12D are the same. We all have different symptoms and different reactions to B12. You have to work out the best regime for yourself by trial and error. Just hang on in there. It will get better. I wish you the best of luck.
So glad you can heal with oral B12. Makes life much easier. Right now, I get up every hour or two to walk (with my walker) about 100 feet in my house, maybe 150 feet at times. So glad you can walk 6 miles! My long term goal is to go hiking again, if I can manage to do that safely.
Glad to hear you had such a quick diagnosis compared to many of us taking months or even years. I also had a crazy fast response. I went from being breathless after walking 10 feet from my couch to my dishwasher and taking 5 dishes out, feeling as if my legs couldn’t carry me or even the ability to finish a shower before having to sit down to shovelling the driveway after my second injection. I had one each day my first week.
Amazing, isn't it, when some responses occur so quickly. I wonder what is happening in the body to make that happen, when I've often read that we shouldn't expect any significant improvement for many months.
It truly is amazing! I was told by an endocrinology doc that is still in denial that this was my issue and that there is no way it worked that quickly. It’s exhausting dealing with some of these docs. I just picture the cells getting what they need to be happy and do their jobs properly. 🤷♀️
I found it very interesting that I only get noticeable rapid improvements for a few hours when my blood stream is saturated with a high dose of B12 - roughly 3-12 hours after an injection (I take cyanocobalamin). Then my improvements slowly fade away over the next 12-36 hours.
But I'm tracking my symptoms each day, and now that I'm getting daily injections, I'm seeing small residual improvements that remain instead of completely disappearing after each shot. A very slow improvement day by day. With only oral supplements, I deteriorate every day.
In the very beginning I couldn’t go more than 2 days before feeling horrid again so I stayed on that regimen for 3 years. This past year I’ve been trying to experiment with them to cut down the frequency. I have managed to get it down to twice a week and interestingly enough did the keto thing for 2 months and went 3 weeks without. I of course fell off of that wagon and had to get back to the twice weekly. I get so much better in so many ways following keto so I will definitely get back on it.
Yes, I started to get some of the strength back in my left arm within a short time after my first injection,and I was so relieved I sat crying in my car. My mother who was numb from the knees down started to get the feeling back in her shins after the first injection too. I still have some residual numbness in the tops of my feet, and I still have small amounts of nerve damage and neurological issues that crop up every now and again, but the difference between how I feel now, and four years ago is night and day. I could barely function before.
Woo hoo! So glad for you and your mom. I, too, was incredibly relieved at the diagnosis and quick response. One of the neurologists at the hospital, who sat down with me to answer some questions, said that he was also very happy it was pernicious anemia, which is easily treatable, as so many of their patients have incurable issues.
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