hi everyone. I was diagonised april 2013. Was told is RRMS and put on rebif in june. Was admittted into hospital for urine retention and this along with previous problems is how i came to get dx…was very quick which i no im lucky if you want to call it that. However nearly a year on this is where im at and im starting to worry and panic more and more everyday how my ms is progressing. A year ago my legs would get tired after 15/20min walking//could shop…drive ect.//was very mobile… Now that has deteriated and i now cant shop for 10mins without falling to the car after…driving is a nightmare, i was able to drive a manual…changed to automatic because of numbfeet…thought this would make it easier however in the last month or so my legs have started to get soooooo tired when driving i find it very difficuly to even move my foot from the gas to brake… so now i dont want to drive as its dangerous and am afriad will have a accident.
I had leg spasms when diagnosed but they wernt too bad…they went away for a while but they are now sooo bad n so violent they r keeping my partner up at night and ive noticed they r starting to wake me up which never happened before.
My bladder has not really improved…yes i now self catheterize so can control this problem but its still a problem that has not gone away.
There are other problems which go on but are not a major bother at the moment but my main worry is i dont have rrms but spms as since last year things have got slowly worse. I dont think rebif is helping but when i saw my doctor he bascially said you havent had a clear relaspe(even though ive had numb feet and other issues) so he wouldnt consider changing my medication untill this happened. this makes no sense to me!!! i am getting worse and that is obvious so i feel like a stronger medfication may hold the deteriation at bay better than rebif. I want to try tysabri as seems to be the best. I dont understand why the doctors want you to get worse and bascially not be able to recover before they think about putting you on the best? isit money? would i be better to go private?
Im 26 years old and feel my life is going nowhere and has no purpose anymore.
any advice would really appreciate please because im so scared.
thanks
coleen
Hi Coleen,
Poor you. Have you tried supplementation? I use vit b12 1000 mcg. I find that it really helps with my symptoms and energy levels.
I also take 5000 iu vitd3, 250 mcg Magnesium Citrate, Acidophilus 3billion (H&B) and Omega3 1g (Boots). The B12 seems to have the most immediate benefit. I am not on medication at the moment and I am feeling pretty good.
Good luck with it.
Adrian x
I am sorry that you are having a horrible time.
How DOES your neurologist account for the worsening of your mobility over the course of the year? Does he/she think that this is a function of residual damage from an earlier relapse? (If your mobility is worse now than it was then, I cannot easily see how that would work.) Or does he/she think it is the result of a new relapse? If the latter, I would be wondering why you hadn’t been posted into the scanner again to see whether there was active inflammation in there, particularly given how aggressively your MS seems to have been behaving right from the start. That would be the kind of evidence that they would want to assemble when considering whether your MS was aggressive enough, and your response to a 1st line DMD poor enough, to warrant exposing you to the risks that go with stronger medication like Tysabri (which I am on, by the way). If neither of those things is causing the worsening mobility, then what DOES the neurologist think is going on? In your boat, I think I would be looking for - at the very least - a clearer and more coherent commentary from the experts than you seem to have had so far.
Alison
Thanks for replies.
Alison I feel like he kinda fobbed me off at last appoint just saying wait n see how I am after being on medication bit longer and my nurse said it could be the side effects of rebif making my mobility worse n might get better with time but I no my own body…I’m just getting steadily worse. I did mention about getting an Mri done again n he again n he didn’t seem to think was much point…I found it so difficult talking to him…he made me feel like I was making a fuss…
Would you say tysabri is the better treatment? Will it slow things down more than first line treatment? I just want to do everything I can to stop this taking over my life…if there is better treatment I just feel like I want to be on it.there not make changes point when the damage is done is there?
Thanks for advice.
Am seeing my neurologist again end of Feb
Xx