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Newly diagnosed but feel like a fraud

Hi, I’ve recently been diagnosed with relapsing remitting MS, although after steroids all symptoms have pretty much cleared up apart from some patchy intermittent numbness in my foot. The neurologist specialist thinks I’ve possibly had 3 relapses and my scans have shown lesions in neck, spine and brain… And a second scan with contrast showed further new active brain lesions in my brain. I had a lumbar puncture which was positive for bands and everything else has been ruled out so neuro says he’s very confident in my diagnosis. He also says he found in one of my legs some increased muscle tone and referred me for physio (which feels fine to me as I’ve been running and cycling with it and had no issues.) He gave me a choice of 3 dmt’s to pick from and told me Ms nurse will be in touch within 10 days… But… I feel like a fraud and I’m wasting everyone’s time because I feel fine. My rational brain knows that early on this can happen, and the dmt’s are to try to keep me feeling this way for as long as possible. My irrational (in denial perhaps) part says, what’s all the fuss there is nothing wrong. Reading the side effects of the drugs is freaking me out because they are clearly strong drugs with unpleasant side effects to take when you can’t believe there is anything wrong with you. Has anyone else gone through this? How did you get past it?

Hi there! I’m newly diagnosed too (currently waiting on my first appointment with an MS nurse to discuss medications etc) but I feel exactly the same. My first symptoms, two years ago now was a bout of double vision, which was extremely disruptive but since then, I have been fortunate enough to have symptoms which are annoying but thanks fully un-disruptive to daily life (slight tingles in my leg and foot). I agree, that it might be some denial on my part too, but I feel like launching straight into medications feels like an overreaction at this stage, mostly because I worry that the side affects will cause daily life (driving and my ability to do my full-time job) to be more difficult. I’m 29 years old… so I’ve got a whole lot of working left to do! :slight_smile: Are you getting much guidance on what dmt will work best for you at this stage? x

Hi to you both

I completely understand your feeling like there’s nothing wrong and why take disease modifying drugs with the potential for side effects when there’s nothing wrong with you?

I always used to tell people ‘I have MS, but I’m really relatively lucky, I have very few symptoms and no disability’. Fast forward to 2012, by which time I’d had MS for 15 years. For the majority of that time, I’d been unable to take DMDs. Partly because they weren’t available initially, and partly because I was unlucky with side effects.

Then I had the most almighty relapse. I spent 2 weeks in hospital and another 2 months in a rehab unit. I haven’t been able to walk since then.

I no longer say that I’ve been lucky. In fact, I’ve been incredibly unlucky.

My point in saying all this is that you have DMDs available to reduce the number and severity of relapses. From my standpoint, I think it’s like wearing a seatbelt in a car. You probably won’t have an accident, but if you do, the seat belt could save you from serious injury. You perhaps wouldn’t have a relapse for 15 years or more even without DMDs, but it’s like having a small amount of insurance that any relapse is either avoided, or lessened in severity.

And in no way should you think of yourselves as ‘frauds’. You’ve got a diagnosis of MS. That’s bloody bad luck. And you probably won’t ever be able to forget you have it.

Best of luck.

Sue

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Hey, thanks for the response, it’s so good to hear I’m not the only one feeling this way. I was given 3 options by neurologist, Tecfidera, Avonex and Aubagio, I ruled out Aubagio immediately, I’m only 3 years older than you and for me I feel like 2 weekly blood tests just isn’t going to work for me. Which has left me with options of Tecfidera and Avonex, I have questions about both but I’m meeting my Ms nurse today so hopefully she will be able to satisfy my questions. Have you been given medication options?

Hi Sssue, Thanks for the insight, I love your seat belt analogy, it makes so much sense to think of it that way,and since I read this yesterday I’ve reminded myself of what you said a few times. My naivety is so high with all this, in my head I truly believe that it’s fine, I’m going to be the person who will have had a few relapses and that’s it over now, and I know that is such a naive way to think… I keep wondering if it’s a coping mechanism for me to deal with the diagnosis though.

Mizzy

Thanks for the appreciation of my seat belt analogy. I might use it again (it just came to mind when answering you, unless I’ve pinched it from someone else - always possible!)

In your position I’d be tempted to aim for the highest possible relapse reduction rate which is Tecfidera. Plus, there was some research done (Multiple Sclerosis Research: #NeuroSpeak: DMF as a second-line agent or not if you’re interested) that shows Tecfidera works best when it’s the first DMD a person has tried. If you don’t get on with it then go for Avonex as a second option. Although you’d probably be better off with Plegridy than Avonex, it’s the same type of interferon (interferon beta 1a), but a two weekly subcutaneous (just under the skin) injection rather than a weekly intramuscular injection. The intramuscular is a bigger needle and it goes in deeper. Believe me, it’s hard to make your brain/hand do the action at first - you do get used to it, but it’s a mind over emotion thing! Although now there are auto injection machines that make life a bit easier - you can’t see the needle as it goes in.

And get on a DMD early, find one that suits you, your lifestyle and your MS, and chances are you will be someone who is treated kindly. It’s not just a fib to tell yourself as a coping mechanism, it’s true. Life was different for me, at first DMDs weren’t available at all. Then I couldn’t take beta interferon (sent me doolally - a very unusual reaction apparently - it seems I already was a bit and the drug just enhanced it!). Then Copaxone worked well for about 5 years. Then there were no more drugs until both Tysabri and Tecfidera gave my stupid system more side effects. So I had relapses.

Many people get on a decent DMD, work it around their life, and go on to have no relapses for years and years, and any they do have would be much reduced in severity. Keep that in your mind and stay positive.

Good luck with your choice.

Sue

Wow, again thanks so much for your helpfulness and taking so much time to respond to me. I decided to go for the tecfidera, so now I need to get bloods done. My biggest nerves with the tecfidera was the reduced white cell count as I’m an open water swimmer and kayaker. The Ms nurse today assured me that if we find it’s not working for me then I am able to switch, she says usually they ask people to try to persevere for 6 months but would be willing to change it sooner if needed. My head is bursting with everything that has been going on so tonight I booked a wee weekend away last minute this weekend to clear my head and get away from everything for a wee while. On Tuesday I’m up at hospital for scans and tests for the future Ms study. I’m actually quite excited to be involved in something and hope that part of this study will allow more knowledge on the condition in future.