Reversal symptoms when starting SI

[Aymelss]

Firstly I just wanted to say a huge thank you to all of the loving support, encouragement and advice on my post last week, I appreciate every one of you so much and I’m sorry that I haven’t replied to all of you, but I have read all comments and am so grateful! I’ve been struggling to reply because brain fog and concentration has been intense!!

I started self injecting on Thursday and am doing every other day, so this morning I had my third injection so far. I saw some had mentioned that symptoms can worsen before they improve so I was hoping to hear about others’ experiences of this…

it’s the neuro symptoms I’m struggling with the most, I have found I feel quite weak and lethargic but mostly I’m experiencing pretty extreme (for me) brain fog, memory, speech issues, concentration etc problems, I do have these normally but am noticing a huge increase. I feel very cloudy and out of it.

I’m not worried at all as I know it was something to be expected and I have my partner home with me so am getting physical support and care, but I am curious if others have experienced such a dramatic increase in symptoms when starting SI and how long this lasted before you started benefitting from the injections?

I have had PA for 15+ years, diagnosed for 7ish years and have had 3x monthly injections since diagnosis. As it’s such a long term deficiency and I did have many debilitating neuro symptoms I’m guessing this is just an indication of how deficient I really was?

I’m sorry if this doesn’t sound cohesive, or is jumbled, I’m doing my best but honestly feel like I’m up in space right now 😂😂😂 Thank you all so much in advance, I hope you have had a lovely long weekend! ❤️

[jade_s]

Hi Aymelss, great news! I know it sounds funny to say that getting worse is good news, but it is 😉😂

Yes I had a severe increase in symptoms as well. In fact after my 2nd injection, I slept for 3 days straight, and needed frequent naps for several months. Sleep / nap if you can - it will help! The body is using up a lot of energy healing all those nerves.

I think within a few weeks I noticed that some symptoms started improving - mainly neuropathy related - tingling, numbness and so on. The brain fog and cognitive problems continued for quite some time before improving - several months at least.

It can also be a roller coaster - symptoms that already resolved can come back, or it can be great one day and really bad the next - for me that period lasted many many months.

No one can say how long it will last, "how long is a piece of string" , but I hope within a month you'll start noticing small improvements.

I'm sorry to say that healing from B12 is slower than slow! But you'll get there, I promise! I passed those weeks reading everything I could on the forum

Make sure you are getting some form of folate / folic acid / methylfolate, especially if levels were low. B12 and folate work hand-in-hand. 400-800mcg may be a good starting point, unless you were deficient.

You might want to also increase potassium-rich foods like bananas, avocado, coconut water. You can google for a list. Potassium gets used up when the body starts making new healthy red blood cells.

[Wheat]

Hello Aymelss, I can sympathise with your current situation, I felt better for a short time then reversing out started with lethargy and brain fog symptoms coming back first. At times it seemed never ending but I had fleeting glimpses of improvements. Fingers crossed, this last week has been better, and so will you too.

[Bellabab]

Its important to have enough folate when loading - dietary intake by eating dark green vegetable like kale, sprouts etc. or baked beans, broad beans etc. I was prescribed 5mg folic acid daily which eased recovery.

[am111]

Things will improve. These things take time to heal and if you see some change, it can only be for the good. You can gradually try to reduce the frequency. Generally, I have found that once-a-week is also quite good for neurological improvement. Once-in-3 months is only for maintenance once one feels perfectly fine. Even that has to be done with gradually reducing frequency and not suddenly.