Advice gratefully received. Dysphasia, b12 deficiency,

[Ellandy23]

Hi guys,

If anyone can help or advise I'd be very grateful. No official diagnosis yet other than dysphasia. I was eating kale and spinach almost every day, until my S&L therapist told me I could no longer eat leafy, flaky, crumbly, crispy, lumpy foods. My daily diet varies between levels 4 and level 7.

Since following their diet my b12 levels plummeted, I took tablets which worked for the time I was taking them, and up until 3 weeks afterwards. Then my levels plummeted again. Dr explained about problems with absorbing b12 after more oral tablets so I am instead having a course of injections. Every 2-3 days for 2 weeks. I feel awful on this. My energy is so low, I can barely keep my eyes open, the b12 hasn't stopped my other symptoms (neurological).

I'm just wondering if this is normal side effect, or is there anything else I can do. Its so difficult to eat most foods and tablets like paracetamol tend to get stuck in my throat, so I'm now on liquid paracetamol. I'm living on soup and on my best days - textured food that I can eat is very sloppy porridge.

If you got this far, thank you for reading. X

[Nackapan]

You can get worse before improvements so hang in there

[aksundell]

I’m so sorry you have to deal with this. It is quite common for people to feel worse before they feel better. I had a tremendous amount of fatigue after starting treatment. I also have throat symptoms. I have some mild dysphasia and weakness in my left vocal fold which leaves me with not much of a voice. I barely noticed these symptoms when I was diagnosed and they got worse for the first two or three years of treatments and now they’re starting to improve. I think most people get better faster. I hope that will be the case for you. I think the fact that you’re feeling something now is a reflection of the better B12 working and doing its thing. I think the theory is that there can be a lot of remodeling going on, taking apart I’ve old structures Leading to worsening symptoms, before the newer better ones are built back again.