hey guys here is the letter from my neruologst about my last visit. Thoughts please?
She came back to see me and her optic neuropathy is improving very nicely. She now sees 6/60, with a smaller central scotoma. The right eye is normal and there are no other abnormal neurological signs.
Obviously, it remains disorientating and peculiar but I think these things are going to settle down well.
Her MRI scan shows new lesions, a reasonably active brain but not too bad and I am delighted. Overall, she is keen to watch the condition for a little bit longer, being very unkeen to try medications at the moment, and this is fine with me for the most part. I told her that I wanted to make sure that her optic neuropathy improves well; if it does not, I think I would probably put her under more pressure than I am at the moment to start medications and certainly, if she has another attack within the next year, I would very forcibly press upon her the importance of using medications, but I am happy to watch this for a little bit longer and she is delighted with this.
Your neurologist obviously feels that you would be better going on the dmd’s!
I have read your other posts with interest and have felt strong concern for your decision not to go on the medication.
Everyone is entitled to their own personal choices in the treatment of their ms and i respect your decision even though i do not agree with it. (I am worried for you)
Could you tell us why you are against the dmd’s please? Are you scared of the injections? or side effects?
I have been on the dmd for a few years now and found it has worked well for me. I just want you to make the right choices and that you know all the facts for making such a big decision that could have long term effects on your health.
If i am correct - i believe that the dmd’s are best started early to have the best effect on your long term health.
She’s pleased with how you’re doing, understands your wish NOT to embark on medication, for the moment, and is reasonably comfortable with that.
She’s simply saying that if things DID worsen (which they might not), she’d be making a stronger case than she is now for starting medication.
But she’s happy to play watch-and-wait, and you are too, so it seems you’ve agreed a course you’re both comfortable with.
I opted not to start DMDs either. I think it’s important for it to be a joint decision, and for you NOT to feel you are at odds with your consultant over it.
My consultant was cool with it, and it sounds like yours is too.
My consultant said he’d be sure to tell me if he thinks I’m doing a silly thing, and it sounds like yours would do.
But for the moment, neither seem unduly concerned, and both are pleased with progress. So fingers crossed it stays that way, for both of us.
What a nice letter. To me this would say, ‘I would like to get this patient onto a DMD now, but that isn’t what she wants at the moment, and she’s doing really well, so I can live with that for now, all things considered. But I’ll be keeping a watchful eye, and if she runs into trouble, we will have to think again, and fast.’
I think Alison and Tina have summed it up well. It sounds like you have a good neurologist. Keep hold of them.
Taking medications is a veery personal decision and it has to be right for you and as long as the neuro doesn’t think you’re doing something detrimental I think you’re fine.
Thanks guys its intersting to read your takes on it.
With regards to Teresa’s comment i totally agree with you that everyone is different and has to be there own decision. The reason i am not up for starting dmds is because of side effects and injecting myself and basically the fact that this is very early on in my diagnosis…5 weeks now. I could be very lucky and never get anything again or for years so why would i impose my body to toxic drugs if i dont need them as yet? I do take on board your comments though. If i do take anything it will probably be that LDN but will see how i get on.