Update

Hope you are all ok, and having more good days than bad.

I promised to keep you all updated on the situation so here we go:

I saw the specialist on Monday night, and we discussed my treatment again. You may remember I refused a drug called Lamotrogine - because of its side effects, I am very drug sensitive. And that the only drug that appears suitable up to now is Phenytoin - although it by no means covers all of the symptoms - and offers limited relief.

Well it appears that we have come to the end of the known useful drugs for my condition. I was offered other drugs but their use would be experimental and given my reaction to others could make the condition worse, as carbomazapine did.

I have refused.

Therefore for the time being - I will not be seeing the specialist.

There is no point in further consultations- as they cannot be of benefit for the time bieng.

I have not ruled out experimental drugs or tretments for the future, just for now. With the use of Phenytoin, and having left work and adopted a new lifestyle, I can live a reasonably decent life most of the time. I still have bad days, and my energy levels are limited but we all have those.

If the situation changes, I may change my mind - but it seems silly to take the risk right now.

The good sides of this decision are that I can start to plan around how I know I am now, and my life comes off hold to some extent, if that makes any sense. Also no more trips to see the specialist - which is a big plus as his understanding of the conditions effects where completely limited to the physical - he had no comprehension of the meaning of it all in the day to day living. This used to annoy me alot. However at the end of the day I have remained in charge.

And I am quite proud of that - I decided how far I wanted to go, and said stop - and he respected it at the end of the day - he had no choice really lol.

Will check in with u from time to time - God bless and thank you for all your support down this last year. I couldnt have got this far without your help and that is the truth.

Love you all

thank you