Hey guys so i went for a check up with my neuro and this is the letter he sent my GP. You think it sounds all good? Just get so nervous everytime i see him cos it reminds me of my diagnosis! Would love to know what you guys think?
Much love xx
Re: REBECCA
DOB 9.12.1985
She is settling down well and, although her colour vision has not returned, her field is better and she now sees 6/9 + 2. I think we will do a visual field next time she comes. We talked mostly about her coming to terms with the diagnosis. She has started a treatment known as LDN - she is going to try from 1mg up to 2mg over the next couple of months and I think she is managing quite nicely. We talked again about whether or not we would use disease modifying agents, should there be a further attack, and that would depend on the timing of the attack; and how she would manage her fatigue without pharmaceuticals. Overall, I am pleased with her progressed.
Best wishes.
That seems rather positive, with the optical symptoms receeding and help with fatigue (though I guess that is about management rather than alleviation). It sounds as if the docs are working well for you.
Thanks, yea i guess it is positive and i was suprised that he was ok for me to go on LDN as i know usually dr’s and specialists are quite anti it. Yea the fatigue is not pleasant!! Do u suffer with it too?
Yes fatigue troubles me too. Ambient temp over 20 and acvtivity are major triggers. I wish a proper trial of LDN would be done - take years though.
Hi Becky - I am investigating ldn. Originally my neuro was pretty ambivalent saying there was no harm he didn’t think it works ,but might have a placebo effect. GP reluctant to prescribe. Emailed neuro to get opinion in writing - now he is changing his mind saying no he doesnt recommend it as might interfere with . Sorry just rereading this thread this doesn’t actually answer anyone’s question Min xx