so I had a call from my neuro’s sec can I make an appt today at 11.30 because I’m due a follow up, and they have a cancellation. I was a bit surprised but agreed. My ms has always been classed as “likely”, as I seemed to tick most boxes but there was no defining proof.
I had an mri about month or so ago, and my neuro said he had called me in to discuss the results. I was expecting him to say that in his opinion there was nothing there so it wasn’t ms. He asked me how I was and were there any new symptoms, and I explained that my right hand and feet had now begun to experience strange altered sensation and also had a weird feeling in the back of my neck like a bumble bee was stuck there and buzzing away!
He showed me the image, my brain showed no change which was good. He moved to the image of my spinal chord and pointed out two new white spots which he said were lesions and accounted for the new symptoms.
So he wants me to start on DMD’s either beta interferon or glatiramer acetate the choice is mine!
I feel so shellshocked that I can’t take in any of the information. He’s a lovely neuro and said that it takes people many weeks to decide which option to go for. How do you chose? Help!
I chose Rebif because it was the easiest option for me - no pesky mixing it up - and the injections were only three times a week. So, sheer laziness is the answer. Served me very well for nine years. It is the best performing interferon I believe. Good luck with your choice
Welcome to the club! Trying to pick which DMD is a tricky one because, ultimately, you don’t know how it’s going to affect you. I know some people pick based on how they’re taken (how often you need to inject etc). But other than that you may as well pick it out of a hat.
The thing to remember though is that if you don’t get on with it, and the side effects are too unpleasant, you can always swap. Personally I started on Betaferon but felt awful on it, so I stopped that & went on to Rebif instead, which was great. But then ask someone else and they could probably say they had the opposite experience.
But I hope you get lucky first time round, and ask away whenever you have any questions.
I don’t know the address so can’t link it to you, but if you google “MS decisions” you’ll find a website that goes through all the drugs with a little test thing to do to narrow done things that are important to you when choosing between the different drugs. Might help you make your mind up a bit.
I’m on the Rebif 3x a week. Reasons I chose it were I don’t have to mix it, it’s 3x a week and I got an auto injector, So whatever works for you and fits in with you - you can always go on to something else if it doesn’t agree with you. I wish you well in your choice, keep us informed of your progress.
That sounds like a nice neuro. It really is down to personal choice. I decided on copaxone because it was daily as I was concerned I wouldn’t remember when I needed to take it. It is now part of my daily nighttime routine. I don’t actually use the auto injector thing because I found it too clumsy. The rebif injector did impress me I like gadgets, but I decided I couldn’t make the decision because it comes with a gadget. Do you have an ms nurse, I had appointment with mine and she showed me them all and answered any questions I had. Ms decisions was good too. Barney
Like Barney, I saw the MS nurse who showed me all the options and the auto injectors which went with them. She gave me a ton of literature to work through and the MS Decisions website address so I could go away and weigh it all up.
I opted for Rebif as it seemed to fit my lifestyle better. At the time it didn’t have the really good auto injector but I switched to that 6 months later when they brought it out. As Dan says, if the first one you try doesn’t work then you can always switch to another one.
Good luck with your decision. At least now you have a firm diagnosis you can begin to tackle it head on and getting on a DMD is the start of that. Don’t be surprised if your emotions are a little up and down over the coming months though, it took me a while to get my head round it. (Always a good idea to have some treats in store for down days )
Chewitt14 I’m leaning towards rebif for the same reaon that you chose it.
Barney my neuro is one of the nicest people I’ve ever met! He always makes me feel that he has all the time in the world to help me. I was with him for around an hour on mondy, and then my ms nurse took me into a different room to go over everything again to make sure I understood. (Think they could tell by my face that I didn’t really take anything in!)
Tracey I like the idea of having treats! I like a glass of white wine occasionally. Can you drink anything taking dmd’s?
Pol the neuro said that with the new lesions and the number of relapses I’ve had over the last two years he can give me a definite dx of ms. In a weird sort of way I feel relieved! At least now I know what I’m dealing with!
Let us know how you get on with the DMD you choose. Your nurse will explain about side effects but it will get better as your body adapts or you may be lucky and not have any! I felt flu like symptoms but took ibuprofen and paracetamol before I injected. Your neurologist sounds great and your MS nurse sounds lovely. I’ve had no support or information from my neurologist and when I have had an appointment he talks so fast and with his accent I haven’t a clue half the things that have been said. He dismissed my symptoms that flared up exactly a year from my first symptom. I had gone from 90+ do’s a day down to maybe 3 a week then they came back with a vengence. He said it was a continuation of what I’d had and it wasn’t a relapse because I would have new symptoms and he’d see me in 6 Months. It has floored me this time and I have been off work now for 6 weeks. Even my GP thinks it’s a possible relapse but he can’t say too much as he admitted he doesn’t know a lot about MS but will help any way he can. I eventually heard from my MS nurse after 2 emails and started Pregabalin tablets too on Monday So hopefully it will help. Let us know how you get on
Yes, you can drink whilst taking DMDs. One of my favourite stories is after I had been on Rebif for about 3 months and had a check up with my nurse I asked what I should do as one of my injection nights was a Friday which clashed with my work Christmas party. I had missed the previous year’s party as I was hospitalised with my first ever symptoms so I fully intended to make up for it. I told her that if I drank as much alcohol as I planned, there was no way I would be capable of injecting and what did she suggest. There are several nurses at clinic and this time I had got the eldest one (picture grey hair pulled back in a bun). She fixed me with a steely look and said in icy tones “if you must drink, then I suggest you switch injection night to Saturday and then go back to Monday, Wednesday, Friday the following week as you will already have had the two clear days without injecting.”. To this day I’m not sure how I kept a straight face. When I was more confident with injections, I discovered that I could do them when I was fairly ratted! Tracey xx
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