I have had the results of my LP and I have been told by GP ‘no protien so looks like it’s not MS but more likely the two lesions found are CIS’ which is the first good news I’ve had in a long time. I understand this can be a one off and I am feeling much better but still have mild symptoms.
I am now awaiting Consultant follow up and going back to work soon and I am going to look at reducing my hours.
My question is - if I have had CIS… WHY am I not being treated so it doesn’t happen again.
This system is worse than legal services and I am shocked at the lack of communication!!
I think there are very few places in the world where DMD treatment is routinely offered in the case of CIS, and the UK certainly isn’t one of them! As you’ve already mentioned, it may not happen again anyway, so the approach in this country is one of “wait and see”. I believe in exceptional circumstances, one or two people have been offered DMDs after a single attack (so in the absence of a confirmed MS diagnosis), but I don’t know the details. I can only assume they were cases where a first attack was so devastating, they couldn’t take the chance of waiting for another.
But the general eligibility conditions - where there are no overriding circumstances - are that you MUST have a confirmed diagnosis, and you MUST have had at least two clinically significant relapses in two years. There are also some provisions around how far you must still be able to walk, although these vary depending on which drug is being considered. I don’t think you have to walk as far for Copaxone as for any of the Interferons.
So I know you won’t find it a very satisfactory answer to your question, but basically the reason is: “Because that’s the rules”. You’re not eligible for treatment because you don’t meet the criteria. If it’s any consolation, you’re absolutely not being discriminated against, or having treatment unfairly withheld. It’s the same for everyone!
If you have another significant attack within two years, you’ll probably not only get your diagnosis, but move straight to a treatment discussion. Oh, and by the way, where I’ve mentioned “treatment” so far, I’ve only been talking about disease modifying drugs (DMDs). None of the above applies to drugs that are only for symptom relief - i.e. you don’t (usually) need an MS diagnosis (though some GPs can be a bit snotty), and there are no criteria for how many attacks you have to have had.
Hopefully, it will stay as CIS though, and in time will just be a distant memory.
The protein that they didn’t find from your LP is the “oligoclonal bands” that you may have heard of / read about on here or elsewhere. Not having a positive LP improves the odds of never developing MS so it is certainly good news
As far as DMDs goes, your LP results would very probably rule you out of getting DMDs even if the UK followed Europe. (The European decision was that DMDs are approved for people with CIS who are at very high risk of developing MS.)
Hopefully it will never be an issue because you don’t ever have a second attack.
Thank you Tina and Karen for your responses…yes I agree it is very good news but I am obviously worried that it may develop. It doesn’t make sense to me that they don’t treat CIS , surely it would make sense( and as they are probably concerned about - a monetary one too) to treat early to stop chances of it developing). This has been a drawn out and poorly communicated service and process. I really am shocked at how so many people on this forum including myself have been treated …from the Gp lack of response to the consultants flippant attitude …I could go on. My heartfelt thanks to you for this forum … Dee x
