Last reply 2 years ago
Diagnosis correct?

Hi, I’m Emma and was diagnosed in October 2016. I had experienced a feeezing sensation in my face which progressed to my arm and leg. All left side. I thought it was a trapped nerve as I have problems with my shoulder and neck on that side. I was referred to a neurologist by my GP and she in turn sent me for an MRI. After the MRI I was diagnosed with probable MS. This was a huge shock to me as it never even crossed my mind. My MRI showed FLAIR old lesions (lots) and also some active lesions. Had further tests (lumbar puncture, physical evaluation and bloods) and was then confirmed as having MS, possibly for quite a long time judging by me old lesions. All this happened within about 4 weeks. My neurologist prescribed tecfidera after saying that she preferred this DMD. I trust her.
BUT I have been wondering lately if it is really necessary. My MRI confirms I have ms. Much as I’d like to deny it, I’m not daft enough to self-diagnose. But am I bad enough to take these extremely strong drugs? I’m not someone who likes taking even pain killers unless I need to, and here I am on permanent meds. Are they really necessary? Shouldn’t I wait a few years and see how it goes?

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2 years ago

YES! It’s a progressive disease! I was once offered beta-interferon, about 20 years ago. Now I’m secondary progressive so not eligible for anything, look into it long & hard before deciding which way, good luck!

2 years ago

Hi @emski76 and welcome.

MS is an insidious condition, where our immune system attacks the myelin sheath on our Central Nervous System (CNS). The MRI scan is a good tool, but does not show the full extent of the damage. Damage can occur without your knowledge, until a disabling event occurs. And, the damage cannot be repaired.

Unfortunately, no-one can predict how your MS will affect you. MS is like that. So, adopting a Disease Modifying Treatment (DMT) now is an insurance for the future. A future which might involve even better treatments, or even a cure.

It’s up to you, just don’t have regrets at some future stage…..

2 years ago

Hi @stumbler, thanks. I’ve read up and researched a lot over the last 2 months and have got to grips with what MS is and how it affects people. I think as I am such a literal person, who needs to see to believe, I think I sort of need to see a relapse before I accept that it needs to be stopped in its tracks. I’m not morbidly wishing it on myself – it’s just the person I am. My husband says to stop overthinking and just listen to my Neuro. He’s probably right and I do appreciate that we are lucky to have the meds to help us, compared to a few years ago. I’ll more than likely take the ‘correct’ path but will still muse over my doubts.
@vicy, I appreciate your experience and thank you x

2 years ago

@emski76 , another relapse could affect your sight, or your mobility.

That’s the risk that you are contemplating. Is it worth tempting providence when your independence may be at stake? That can be the gravity of the situation……….

2 years ago

There’s another way of looking at it. Going on a drug always entails close monitoring and monitoring is good news. It’s done to minimise the risk of taking DMDs but it’s also very useful for the MSer because it guarantees regular contact with health professionals. A lot of people on this site talk about how isolating MS can be and we can all relate to how anxiety can lead to worsening symptoms. I’ve found that the support I get from the MS nurses has been really important. If there is any problem with a drug, the med team will be onto it. Among all the ifs and maybes, the only certainty – to quote Professor Giovannoni – is that untreated MS gets worse.

2 years ago

When I was diagnosed I already had two aunts that had MS before there was any treatment. One of them had already died at the age to 50 she was diagnosed at the age of 28 and had to go into assisted living by the time she was 30. I basically knew what she had gone through and the first question I had was do you have any treatment and how soon can I start. I will do anything I can to slow down this disease. I was on Rebif for 5 years and have been on Tecfidera for 3 years. My neurologist says he his impressed on how well I am doing. MS is a battle you have to take seriously, I had a lot of lesions also, so I had to make up for lost time. Potter

2 years ago

This is interesting. So different from the days when I was diagnosed 22 years ago. I had a terrible shock too. My symptoms were similar to yours at the outset. 22 years later mine is significantly worse. I now have problems with my feet and legs. They didn’t have anything to offer then except steroids. This is a progressive disease and everyone experiences it differently. Advice take all the help you can get. Good luck!

2 years ago

You are feeling good now but that does not mean you will be like that forever. I would take the drugs. I am personally on Gilenya, tecfidera is not a bad one either with regard to bad secondary effects ( there are loads of secondary effects in the paperwork but you need to check the percentage of people that get them)

I was on gilenya for 2 years keeping really well until stopped for a year and i got so much worse! The thing is these drugs they say tend to slow the disease preogession. They are not a cure but the best you can get.

A new relapse could be fatal you must minimize the risks.

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