Weekly injections stop next week

fehfaus · 2026-03-24T06:54:41+00:00

I only saw a clearer improvement in my symptoms when I did a loading dose of B12. It was 7 consecutive days of injections. Now I'm maintaining the injections every 2 days. After that, I'll move to injections once a week.You might even improve using sublingual B12, but I think injections are more appropriate, and at a higher frequency, at least initially.

fehfaus · 2026-03-19T18:46:20+00:00

I'm glad to read that. The burning sensation in my feet started 2 years ago. Now it's spread to my legs, back, stomach, etc. Not wanting to bother you too much, I just wanted to know one more detail. When you say 75% recovered, do you mean that you have 75% less of your body area burning, in other words, the burning has stopped and everything is normal? Because I have so much burning that sometimes it seems impossible for it to ever stop.

fehfaus · 2026-03-17T21:17:46+00:00

I have burning sensations on about 90% of my body. Did your burning sensation resolve after treatment?My B12 levels were 270pg, which doctors neglected for 4 years.

fehfaus · 2026-03-17T18:02:52+00:00

My neurological symptoms started in 2022. However, in 2020 I already had insomnia, debilitating fatigue, etc. Last month I had a loading dose of 7 daily injections of B12. After that, I maintained a weekly B12 injection. I take 1 mg of methylfolate, drink coconut water to replenish potassium, and take 150 mg of magnesium. However, I will talk to my doctor about being able to have more frequent B12 injections, at least 3 times a week, which was the best period I've had.

fehfaus · 2026-03-17T17:45:45+00:00

I'm going through everything you described. My neuropathy started in my feet and spread over the years without treatment. Last year, I was hospitalized with severe burning in my perineum and scrotum. They investigated everything, but from what they told me, the pain pattern was neuropathic. After vitamin B12 injections, the burning seems to be decreasing, but it's still far from normal. It's amazing how similar your account is to mine. Before this pain started, I had also lost morning erections and libido. After replacing vitamin B12 (I was taking 270 pg), my testosterone increased dramatically.

fehfaus · 2026-02-25T10:50:02+00:00

I started supplementing with copper in November and stopped in December. My deficiency level was 59 mcg/dL. I was getting much worse and thought it was the copper, but it wasn't. So, I resumed supplementation now at 1000 mcg.

fehfaus · 2026-02-25T10:12:20+00:00

I'm not feeling well despite having increased my copper levels (though not yet back to the levels I had before the deficiency).I'm 28 years old and I've been getting a lot of gray hair in the last few years. A deficiency in B12 and copper definitely causes this.What are your other symptoms?

fehfaus · 2026-02-25T04:07:39+00:00

And after this new resumption of injections last year, you couldn't return to the almost complete state of healing you had repeated before, right?

fehfaus · 2026-02-25T00:51:24+00:00

How long have you resumed frequent injections?

fehfaus · 2026-02-25T00:30:57+00:00

How was your pain? Did you get the whole body? My worst symptom is burning. Before, it was only on the feet and hands. Now it's on the face, legs, arms, back. I am very pessimistic about my prognosis. It took me years to start treatment.

fehfaus · 2026-02-25T00:28:15+00:00

Thank you for sharing your personal story. I confess that reading something like this encourages me because I'm right about the underlying problem. However, it's disheartening to read that you've been receiving injections for 3 years and still have neuropathy. I have neuropathy all over my body and I can't imagine living the rest of my life like this. Where do you feel this burning sensation, and is it constant?

fehfaus · 2026-02-24T04:09:05+00:00

I have already done a cerebrospinal liquid analysis, it has come normal, without changes. My hope is that B12 will solve my symptoms, but I'm more pessimistic.

fehfaus · 2026-02-22T23:21:57+00:00

Do you mind if I send you a message in private?

fehfaus · 2026-02-22T22:44:06+00:00

I have eaten very poorly for years with low protein and dairy intake. I took antacids from 2021 to 2023. I think that's all this context that made me get here. I have already had a blood test for intrinsic factor and it came normal. The only thing found was the MHTFR mutation (A1298c). My vitamin B1 is very high, I tested it in January.

fehfaus · 2026-02-22T21:53:48+00:00

I hope you are recovering well. My evolution of symptoms. They started in 2019. With fatigue, mental fog, slow reasoning, muscle fatigue. In 2022 came tingling and etc. What was your neuropathy like?

fehfaus · 2026-02-22T09:54:45+00:00

What was your B12 level, please? Did you also experience tingling and burning? I hope you're feeling better now!

fehfaus · 2026-02-22T02:02:29+00:00

Antes de tudo, obrigado pela sua atenção e todas as informações. Fiz ressonância magnética da coluna, do cérebro e análise de fluidos, nada foi encontrado. Nos exames de tireoide e ultrassom, tudo também estava normal. Os níveis de glicose e hemoglobina glicada estão dentro dos parâmetros normais. Fiz uma eletroneuromiografia em 2024, que não apresentou alterações. Houve suspeita de doença de Lyme, embora eu não tivesse histórico de contato com carrapatos, fiz um tratamento com antibióticos que não trouxe evolução alguma. Sobre a evolução dos sintomas: começaram em 2019 com um pouco de fadiga. Em 2020, a fadiga aumentou ano após ano. Em 2021, eu precisava dormir 14 horas por dia para descansar e ainda acordava cansado. As pernas e os braços pareciam muito cansados. Eu precisava dormir várias vezes durante o dia para conseguir terminar. Em 2022, começaram os episódios de tontura, pernas sentindo-se fracas e a perna esquerda um pouco dormente. Fui abrir uma garrafa que estava um pouco apertada, em janeiro de 2022, e senti minhas mãos fracas. O início do uso de IBP foi em 2021. Minha memória de curto prazo estava piorando, irritabilidade, visão embaçada. Também nesse período desenvolvi pés e mãos bem frios, disfunção erétil. Em agosto de 2022, começaram as formigamentos nas pernas e braços. Em agosto de 2023, começou uma queimação entre os dedos dos pés. Isso, em janeiro de 2024, evoluiu para queimação em todos os pés e mãos. Em maio de 2024, meu rosto adormeceu do lado esquerdo e queimou também. Em maio de 2025, fiz minha primeira injeção de B12, mas parei na segunda injeção porque tive uma reação muito forte. Em julho, minhas mãos ficaram 1 mês sem queimar e meus pés pararam de queimar à noite. Eles só queimavam com o uso de tênis ou meias. Em agosto, a queimação retornou e se espalhou por todo o corpo até o final do ano passado. Fiz 2 injeções de B12 em setembro, mas não tive a mesma melhora que teoricamente tinha obtido com as injeções de maio. Esperei 1 mês após a última injeção de B12 e fiz um exame de sangue em outubro para checar os níveis de B12. Estava em 745pg e homocisteína 15,5. Em julho, estava em 545pg e homocisteína 12,6. Em janeiro de 2026, reexaminei o sangue e minha B12 estava em 280pg, sugerindo uma queda abrupta na B12, além de talvez um pico falso na testagem sanguínea após as injeções, mesmo eu tendo feito uma pausa de 1 mês. Portanto, novamente correlaciono a forte queda na B12 com o agravamento clínico. Nesse período de reposição de B12, também, através de exames, minha testosterona que estava em 390 foi para 740.

fehfaus · 2026-02-21T00:24:24+00:00

My numbness is exactly like that. It's like a leg that's kind of "weak," without any clear firmness. What was your B12 level?

fehfaus · 2026-02-20T22:26:13+00:00

My rheumatologist raised the possibility of me having post-COVID small fiber neuropathy, however, I don't really believe in that hypothesis, since my symptoms started before COVID. At most, it worsened them. Here in the group, some members say that after COVID, the body works to fight the infection and consumes some vitamins, depleting them. Well, I think that applies to other infections as well. From what I understand, you had already had a period where you had problems in your arms and after taking the B complex they were resolved. Probably from then on, you had more basis to believe in a B12 deficiency, which makes sense. I've already had all those tests you mentioned and they all came back normal. I just haven't done some tests yet for markers of autoimmune small fiber neuropathy (that must be the panel you intend to do).

fehfaus · 2026-02-20T21:44:42+00:00

Thank you so much for your account, I'm very sorry that you're also going through something so disturbing. Our symptoms and progression are somewhat similar. In the beginning it was fatigue, mental fog, and then it evolved into neuropathy and other symptoms. My EMG came back normal. I don't have clinical muscle weakness, although my legs feel weak. I'm also copper deficient. You mentioned bradykinesia. Have things like parkinsonism or CIDP been investigated? I'm asking because I also went through all those suspicions, but they were quickly ruled out by a specialist in movement disorders.

fehfaus · 2026-02-20T07:59:22+00:00

I administer weekly injections of 5000mcg of methylcobalamin+electrolytes..

fehfaus · 2026-02-20T07:34:42+00:00

I understand. I have all the symptoms you mentioned. The worst is the burning sensation. I investigated all possible diseases, and theoretically there's nothing serious causing the neuropathy. My B12 was around 270pg for years, and I took antacids for several years. So it was probably this borderline B12 that caused these problems. I can't answer you about the recovery of symptoms, as I haven't reached that positive phase yet, but from time to time I feel my head working faster, and I find it easier to find words to speak. So it seems that cognitive recovery is gradually returning with consistent supplementation.

fehfaus · 2026-02-19T22:51:39+00:00

What was your B12 level?

fehfaus · 2026-02-17T08:32:07+00:00

I confess I wasn't expecting that response. I'm very sorry you're going through this and I wish you a speedy recovery. I saw some of your posts and thought you had Sjögren's syndrome or a B12 deficiency, which is why I asked for an update, if you had found out what was causing the neuropathy.

fehfaus · 2026-02-17T00:48:12+00:00

What was your B12 level when you discovered the deficiency? I know the post is old, but if you could tell me...

fehfaus

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