5 years ago
Confused

Hi all
Was so happy to receive a link to a newspaper article today although now I feel confused as a number of people on here say that they take meds. I was diagnosed after a MRI scan 3 weeks ago and it is believed I have RR MS. I was given 3 days of steroids in hospital but was sent home with no mention of further medication. I am still suffering as still have a problem with my vision? I am now thinking I am suffering still because I am not taking medication? I did get rid of my double vision when I got home 2 weeks ago from hospital but have made no improvement since!

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Hey Roxanne,

Relapses are funny things, and while they can do a lot of damage very quickly, they can take a while to sort out, like when kids make a mess, they will take a lot more time to tidy stuff back up.

Firstly, I’d ignore the newspaper article, they generaliise far too much. The three days of steroids are quite normal to treat relapses, they help to bring down the damage of the nerve, but normally it can take many weeks, sometimes months, for the damage to finish repairing itself, and it is not always fully either, unfortunatly.

Second, the meds that you hhear people talking about on here are called DMDs or disease modifying drugs, there are 4 main licensed types and they work my reducing your relapses or flare ups by around a third, so if you were, statistically speaking, experiencing 3 relapses a year, then they would expect you to only experience 2 in any given year and they are each administered by a self administered injection, much like the types diabetics get. There is a fifth DMD that is twice as effective but you need to have experience 2 disabling relapses in a year to qualify and it does come with risks.

I must point out thought, that even if you were to start one of these drugs tomorrow, it would make nno difference to the speed of or how fully you recover from your current relapse.

Have you been given an MS nurse? They would be the first people for you to talk to in regards to drugs for MS.

I hope that has helped you, if you need to talk you’re welcome to message me 🙂

Gav

Thank you so much for your response, it has stopped me feeling so confused. I have an ms nurse but not due to see him untill I have seen the neurologist which isn’t until the end of may. thanks again for answering my questions and clearing up that part of my confusion!
Best wishes
Roxanne

Happy to be of help 🙂 I know how confusing it can be when you’re newly diagnosed, you’ll many unsubstantiated claims that people can ‘cure’ MS, but I advise taking any such statements with a particularly large grain of salt 🙂

I wish there was a “like” button for people’s posts!! You make me laugh, Gav!!!

Thanks lilly, I do try, although I wasn’t there 🙂

Gavin,
Your advise to Roxann was spot on!!
I could not have said any better myself!
You sound like a lovely young man. Your mother must be very proud of you!!
Jane

Thanks Gav for that explanation. I am aware of the meds but was unsure how the powers that be deem it appropriate to you.
xx

you should be able to phone your MS nurse, even b4 an appointment.
Every persons MS story is unique………..for example i have no drugs for the MS.
Often heard it said, there are no drugs for MS, only for the symptoms. Not a ot of help, i know

@indigojane Thankyou very much, she is quite proud, yeah (which mums aren’t?)

@bubblegalore A lot of which drug they offer you will be dependent on how active your MS is, the four that you inject yourself are pretty much the same, or they all have a similar expected reduction in relapse rates. The big boy, Tysabri, costs twice what the other drugs cost, so your neuro needs to weigh up the cost to benefit ratio, along with a whole smorgasboard of other factors too.

@reddivine I think you may be mistaken with your statement about there being no drugs for MS. Its true that they are yet to have any drugs to treat MS when its in the progressive stage of the condition, but I did here recently about trials for a drug to treat primary progressive MS, I must point out though that it was just in the prelimanary stages.

I had double vision when I was first diagnosed, and had steroids to speed up recovery. It didnt improve overnight , but did go back to normal after a few weeks. I’ve had a relapse recently and managed to get steroids again pretty quickly after symptoms first appeared and again it took me about 6 weeks to be back to having normal vision and feeling ‘safe’ to drive ( like you the double vision cleared up fairly quickly, but vision not perfect till 4-6 weeks later). Message me if you want to talk more. Best wishes. X

I did have double vision going into triple vision. Then the vision started to go. I had IV steroids over 5days and it did the job.I also got the feeling back in my left side of face.
It seems to me that the treatment we get depends on our post code?
I send out my love tonight to you all,just because i have had a very silly day.
Janex

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