I was diagnosed Feb last year with a large lesion on my spine and a positive LP not to mention a symptoms for years before. Anyway last may I started Rebif and in the summer I had a neuro appointment where I gave my neuro a list of new symptoms. After reading them and a quick physical exam he said that he was worried from looking and my list but from my exam he thought there was no progression and that “my mood” was making things worse. Needless to say I left his room in tears but after calming down I thought he might be right and decided to stop analizing everything and get on with life.
Now fast forward to xmas where I got a numb tongue, fatigue a lot worse and aches all over. Then mid january ended up getting admitted to hospital for a week for ON. I got a brain scan a couple of weeks later and with an apointment with my opthamologist last week was told the results. There were a few areas of demylination but not on the optic nerve. He said this didn’t mean that there was none there as very hard to detect on an MRI especially if not done at the time and after steroids.
So from last year only having lesions on my spine and being of rebif I now have multiple lesions on my brain (no idea of how many or position untill see my neuro) and lots of new symptoms.
First of all im so pissed at my neuro for not taking me seriously and secondly I am now trying to second guess what he will do.
I know DMD’s are only supposed to slow down relapse rates but this seems quite quick to me.
Any advice, guesses as to what may happen next?
Sorry for the ramble but I have no one else to talk to about it as im trying to stay calm infront of my family.
Hello baby love, Would like to help but I’m sp so have not tried DDM’s. Sure someone with more info will come along to give you advice soon, In the meantime GOOD LUCK, ng
Sometimes it is helpful when things are a matter of fact rather than opinion. Helpful for us and helpful for neurologists too: it reduces the scope and temptation for guessing and maybe making assumptions about people that are not well grounded in fact. It is horrible for you that you have had ON etc, but at least you should not have any trouble getting him to take you seriously. I hope the consultation goes well. Alison x
I wanted to tell you about my experience because it has some things in common with yours - hope it helps with what you might think about asking for or about.
I was diagnosed with MS in 1999, because of one fall, an anxious husband and some odd reactions to reflex tests etc given by my GP. I had an MRI that showed lesions, but didn’t get offered dmds (I’m not sure they were available then). I deteriorated slowly for the next eight years but didn’t have relapses. I was offered beta-interferon but from my understanding at the time the interferon type drugs don’t slow deterioration, they only reduce the number of relapses you have. I’m not sure if this is true about rebif but it is definately worth asking your neurologist. Everyone seems to assume the dmds slow progression but I had heard something different from this (on a Radio 4 programme about MS) and my neurologist confirmed it in 2007 - they might think something different now.
I started to have relapses and deteriorate more quickly around 2008. I had slipped off the radar of the neurologist I had been seeing and was unwilling to draw his attention to this because I thought he was useless. I started seeing a much better neurologist at the National Hospital for Neurology and Neurosurgery in London in 2011. He put me on Tysabri, which is meant to reduce your relapse rate AND your rate of deterioration by about two thirds (on average). I don’t think it has done as well as this for me, but while I’ve been having it I’ve met people who’ve seen much better effects.
The effects of the various dmds are described on the MSS website - you might want to look there and see what you think would slow down your deterioration.
I can let you have the name of the neurologist I see now if you’re interested in trying to change - my GP told me I was entitled to a second opinion and so I see him on the NHS.
Hope this is helpful - feel free to post questions if it was something different you wanted to know, or you want more detail.
Just checked on the treatments section of the site myself. Rebif is with beta interferon etc as a drug that reduces relapse rate but not accumulated disability. If you want to slow down the progression of your disease you will need to try and get Tysabri (or Gilenya -don’t know much about this one) - but be aware of the serious side effects some people are at risk of.