Am I getting better or is my illness worsening?

[Alfabeta]

After beginning my injection cycle (every 12 weeks) over three years ago, a range of symptoms very quickly disappeared but a recurring symptom (s) continued.

1 a semi conscious state would occur - like a stream of consciousness event in an old movie external voices/noises would decrease in volume and ones thoughts became internalised.

2 a loud tinnitus would occur - like the interference on an old tube radio caught between stations.

3 a sense of euphoria would occur and a series of random voices would occur which seemed to make sense as in a dream but made no sense afterwards

4 then the sequence would end and I would be confused for a minute or so - if I was reading or someone was talking to me I could define the words but they made no sense..

The event would last up to 10 seconds.

The events lasted up to 8 days occurring between week 6 to 8 in my injection cycle. On the first day, I would have up to 8 events then, over the week they would decrease until they stopped.

Occasionally, I would get one or two events just prior to the injection or on the day or just after.

The tinnitus ceased after around 18 months and has never reoccurred.

The auditory hallucinations ceased after around 36 months and has only recurred a few times.

For the last year, I have only had stage 1 and 2 occur and a much shorter duration no more than 5 seconds but at around the same time each cycle and the same number of days with the same frequency.

I have also developed a series of pins and needles like slight stinging sensations all over my face, neck then down my arms and a little in my legs. It’s not painful but quite irritating. It comes and goes and varies in frequency but it never lasts long.

In the last cycle, the rhythm of the events changed. Previously, they had occurred daily in the sequence explained above but this time they occurred intermittently missing a day then reoccurring and instead of diminishing sometimes there were a couple of events and then a multiple but never more than 8.

I had my most recent injection on the 15 March.

For the first time since diagnosis, the 1 and 4 symptoms occurred at the end of week 2 and, as of today, have been occurring in a spasmodic manner as they did in the last cycle.

Pheeeeew! Sorry for the long windedness.

I did try to explain this to my doctor on April 2 but he just looked bemused. However, for the first time, he agreed to give me injections every 8 weeks instead of 12 weekly.

I’m assuming I have damage to my myelin sheath and the very elderly Indian doctor on the b12 site said that I was responding to treatment which, although my doctor didn’t say anything, he probably holds the view - what can one do but give you the medicine more frequently- which is fair enough I suppose.

I hope the description helps any fellow sufferers - I know I feel pretty isolated with my illness because I’ve only had a few people respond who have had similar symptom.

I must say that, between events, I feel perfectly well and regularly count my blessings when I hear of those with PA who virtually have no respite from their illness.

Good luck, all, and so many thanks to those of you who are ill and yet go out of your way to help others.

[clivealive Forum Support]

Hi Alfabeta you may well benefit from the more frequent injections as do so many on here and also myself. Time will tell and I wish you well.

[Alfabeta in reply to clivealive]

Thank you Clive, I look forward to your canonisation.

Good health you lovely person

[clivealive Forum Support in reply to Alfabeta]

Ha Ha to be "canonised" one either needs to be "fired" or dead and I'm still "clivealive" at 77

[weazle74]

j have low b 12 101 and i have titanius in my ear and head very sad depressed anxiety panic attacks only use orall sprays would correcting vitamins help titanius? and i am asking as most the promplems you have is all like mine .. i am sure ijections are helping you my doctor says i dont need them but i wish he would give me some so i can feel beter