I am new to the forum and I’d like to share my experience and ask some questions to compare symptoms and find out people’s opinions on the various treatments.
I started getting numbness in my fingers and feet 3 years ago after my last dose of the hepatitis B vaccine. A year ago I had a big episode with extreme fatigue, blurred vision, urgency to urinate, photo phobia, headaches, confusion, irritability, pain in my left arm and now leg. I got 2 MRIs showing multiple lesions on my brain and nothing on my spine. I have seen several neurologists as I have other signs of inflammation in my body - like arthritis and I needed to find out if I had MS or another auto-immune disease called Behcet’s. At this point I am looking at having both conditions, which makes treatment choices more difficult to make. 2 of the neurologists I’ve seen suggested a “wait and see approach” and MRI follow-up at 6 months.
I’ve only been taking anti-inflammatory NSAIDs, 2 cortisone injections, and colchicine which is also an anti-inflammatory given for Behcet’s. A lot of my sysmptoms have calmed down but I still get the fatigue, numbness in my limbs and pain in my left arm, urgency to urinate.
The first neurologist I saw wanted to put me on interferon right away saying that even if I only had one major episode it is better to start early and that if I did not get any relapse in 5 years’ time I could stop the treatment at that point.
I was just wondering how long after dx did you start the treatment? Were you told to wait before getting treatment? Did your symptoms get better on their own?
Hi Lara1 I’m new to this site too. I was diagnosed with relapse and remittance ms in January I didn’t think anything of it and just thought I would have yearly MRI scans! But no they then threw medication into the equation which had my head spinning and I didn’t know what to do!? After thinking about it for a couple of weeks I decided to go with avonex weekly injections and the reason been,for all the meds can’t cure or stop ms they can slow it down and reduce the relapse and I wanted to do that now when I only have a few lesions instead of risking a couple of years down the line with more damage done that I can’t reverse. So that’s how I came to my decision I hope this makes sense and helps? Good luck in your decision making and take care em
Hi Lara, I would grab the interferon with both hands. In some countries people diagnosed with MS are immediately started on DMDs. Slows disease progression and reduces relapses. I believe that it doesn’t happen in the UK due to cost - I could be wrong. But it costs £9,000 per year for my rebif. Here you normally have to have 2 significant relapses before being offered DMDs. So this will be different for everyone. I believe I started them maybe a year after diagnosis. Symptoms getting better on their own - cant really answer this one as started DMDs. Some of my symptoms are gradually getting worse - but I put that down to the enormous stress I am under. It is a big decision to make. As injecting just isn’t a natural thing to do. However I look on it positively as fighting the b…d MS. Also I have sort of got used to injecting and accepted it as just something that I have to do. Good luck Min xx
Thanks for replying! So you are both on interferon. What are the side effects that you are experiencing? What is the difference between having weakly vs more frequent injections? Does it hurt at all when you inject it? Does it leave marks on your skin?
I have not made my decision because as I was saying, I have other symptoms going on and the neurologist was not able to explain what the effect of interferon would be on my other condition. And I would also have liked to maybe have a baby this year… I don’t know if it’s safe to get pregnant under the circumstances… but I imagine that if I start the treatment that is out of the question. Has any of you dealt with this issue?
Hi Lara, I started on 22 Rebif and then went up to 44. No regular side effects. Very, very occasionally I will feel a bit rough the next day. Also I very, very occasionally get acutely sore eyes. I blame the rebif for this - but I must be an enigma as no one else. Weekly vs more frequent injections? - I do not like injecting so would prefer weekly - but chose Rebif which is 3 times a week. Yes I am moaning when really it’s not so bad. It does sting a bit injecting - but not major pain. Yes do get injection marks as bruises - but not with every injection. Can’t comment on pregnancy question as no children for me. Hope this helps Min xx
