Last reply 4 years ago
Really, MS?!?

I was diagnosed with MS in March this year.

However, my medical history goes back to 1997. Back then, I was diagnosed with Uveitis. Ever since then my doctors suspect that I might have MS, but MRI and other test results have always been negative. Mid-2011 I saw double. Again MRI and other tests, but still no evidence but indications were getting stronger.

This year (2014) in February, I had strange sensations in the right side of my body, in my fingers first, then hand, then arm, later leg and so forth, every day a little more. My doctor sent me to the hospital, another MRI and tests and, for the first time, a lumbar puncture. And there it was, the evidence that I have MS. After the diagosis I was given a cortisone pulse-therapy and released a few days later with the recommendation to begin a basic treatment with Betaferon or the like.
I have not begun with any treatment yet. I actually feel bettern than even months before my latest “attack”. Now I realise what other symptoms I had before and they are all gone. Sometimes I think I feel something strange in my fingers but it is nothing in comparison with what I have felt in February/March. And – is it really a strange sensation or is it my mind playing tricks on me because I observe my body more anxiously now?
Sometimes I think it cannot be MS. I feel too good now, no problems with my body at all. But then there are the test results, the lumbar puncture… Then I get scared, when I think about what might happen to me in the future.

You see why I am rather skeptical when it comes to basic treatments. When I have an “attack” every couple of years – is it necessary to take such strong medication? I have already talked to my doctor about Tecfidera. A few years back I have had a treatment against Uveitis with Fumaderm, which has a similar active ingredient (dimethyl fumarate), and I tolerated it very well. But still – do I really need this yet?

Does anyony know how I am feeling? Sometimes I pity myself, then again I feel like a fraud when I read about other MS patients because nothing really bad has happend to me yet.

I will be happy about any comments!

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4 years ago

If you have had an MRI scan where a consultant can spot multiple lesions on your brain, then you have MS. The symptoms you have depends on what type of MS you have, relapsing/remitting, progressive or the one which you probably have, whose name i can’t remember 😉

4 years ago

I could not believe my diagnosis either, as my pattern of attacks did not seem like anything I had heard and I had learnt to cope with all my residual symptoms. However my Mri test and lumber puncture were conclusive and the more deeply I have read about MS, the more I recognize myself. I also realise that things are getting slowly worse and I wish I had started DMD a earlier.
I really do know how hard it is to accept. I spent a year fighting it with second opinions, the works, but now I have accepted it and am very pleased to be taking gylenia, which has zero side effects ( for me).
Do some more reading on good web sites and keep asking questions, but my personal advise is don’t put off starting a DMD. best wishes

4 years ago

@sternschnuppe , I think you’ll find that most of us can relate to your feelings. You’re going through a bit of a denial phase, which is understandable.

A diagnosis of MS is a bit of a shock to the system, a life-changing event. It does make us look at everything with a different view.

But, the big question is do you opt for a Disease Modifying Drug (DMD) now, or wait to see how it goes? Well, you don’t want to be in a situation five years down the line, where you start regretting that you didn’t start earlier!

It really is a difficult call. MS is so unpredictable, that no-one can give you a definite prognosis.

So, it’s a conundrum, with two schools of thought. One of which says start the DMDs at the earliest opportunity and one that says amend your lifestyle and avoid the drugs. And this is another unknown with MS, which is the best strategy.

Your clinical history may give you a clue. You’ve experienced a few events that you may be able to put down to MS. Are you aware of anything going on in your life that may have preceded these episodes? Quite a few of us see stressful events preceding an episode, which suggests stress may be a trigger.

So, if you can recall any triggers, you may be able to move forward in life, trying to avoid these events.

But, with DMDs, it isn’t a straight Yes or no. You could adopt a wait and see approach, adopting a DMD if circumstances dictate that would be a wise move.

For the moment, just think about the situation, learn about MS and see how you feel. Ask questions and share your thoughts.

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