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Is It Always Such a Circus?

Honestly, is it always such a circus? I was diagnosed in September (surprise!) and started on Tecfidera in November, and was told that for the first six months I’d be getting monthly blood tests and chats with a nurse. My MRI previous to my official diagnosis and starting treatment wad in March last year so well out of the 3-months they recommend when starting tec. I’ve seen a nurse twice since then and my next appointment now isn’t until the end of April. My last appointment was at the end of January and the clock was stopped as I’ve developed a resting tremor. The nurse was surprised when she asked about my last MRI date, and said she’d get me in for another one to see if it’s active now. Still waiting but I know there’s a backlog. The tremor feels to me like me first actual symptom and I’m scared, properly scared for the first since my diagnosis. Only now do I recognise that so many “normal” things for me are actually MS. My diagnosis itself was a surprise find when they were looking for a lipoma. All I want is for them to be straight with me and tell it how it is. I just want to know what my expectations should be. And because I have had no side effects from the tecfidera except for a flush once and a procession of colds, I’m petrified (and it would be just my luck) about PML as slim as those odds are.

Hi there Girl, welcome to our forums. It’s usually a big shock when you’re diagnosed and even more real when you become aware of symptoms, like your tremor has. Of course it’s frightening because you have no idea what to expect. You might hear or read of others with MS, but there isn’t a case that’s identical to another. Similar to fingerprints. Your MS is just yours and there isn’t any pattern to show any of us a glimpse into the future.

To be honest, you’ve had the diagnosis quite quickly and Tecfidera very quickly after diagnosis. MS nurses & consultants aren’t really a circus, but the thoroughness of the professionals usually takes some time. I understand your need to know what to expect, but there isn’t a direct answer due to the individuality of each symptom.

It would be an ideal world if we had 4 meetings each year with our MSNurse, an annual MRI, regular blood tests, an annual Neuro Consultant appt, but we do not have an ideal NHS. You can depend on the truth from the professionals, they have nothing to gain from withholding it. You can phone your MS Nurse any day, for knowledge and reassurance from your understandable fears.

It takes a while to come to terms with any type of MS. There are lots of info booklets available from the MS Society.

I wish you well, take care of yourself.

Hello Reading Girl

Yes. It’s always a bit like joining the circus. Only scarier than the worst clown.

‘Normal’ is, as you’ve found out, something that is as individual as we all are. There really is no MS normal. Not even a relapsing remitting MS normal. Or an RRMS on Tecfidera normal.

Our NHS services too are very much dependent on where in the country you are (so there’s no ‘normal’ there either).

It actually sounds like Tecfidera is a good drug for you, with few side effects. And according to the Barts Blog (which is an excellent resource) Tecfidera works best of all when it’s the first DMD a person has tried.

Don’t worry about PML. You can only get it when on Tecfidera if your lymphocytes level is depleted. And the blood tests you have check for those (they are part of the white blood cells and their job is to fight viruses). You also need to have positive antibodies to the JC virus. And it’s so rare on Tecfidera that the NHS don’t even test for JCV status - as they do if you’re on Tysabri.

It’s a bugger that you’ve got a new symptom. And that you actually have symptoms that you’re only now becoming aware of.

But that’s the problem with MS. Normal is what becomes normal for you. And symptoms do tend to slowly remit over time. Honestly. It may not feel like it at the time, because remission is so slow. But it is happening. And those symptoms that hang about, your system gradually adapts to. Other nerves compensate for the deficits and you only realise things are getting better months down the line. I never actually felt my feet properly after my first relapse 21 years ago. But I soon didn’t know what they were supposed to feel like.

You’ve had a massively sharp learning curve. I don’t know what’s worse, having a fast diagnosis with the shock value that accompanies it, or a slow diagnosis over some years. In a way, both are as bad. An MS diagnosis is just that. And it’s awful. Plus not fair that you now have this uninvited guest in your life.

I think as Chrissie said, most doctors and nurses are pretty straight and do, tell it how it is. Once upon a time they didn’t think their ‘patient’ was a person who should be communicated with. They would discuss you as if you weren’t there. And outright tell fibs to your face. Life is sort of tougher now, but much more honest.

Good luck with the circus. Hopefully you can juggle. Or learn to!

Sue

i have had 3 monthly appointments with my ms nurse since starting on tecfidera.

however i no longer drive and the taxi fare is huge.

ring and ride refuse to take me because it is 6 miles and that’s too far.

so i told my gp and they arranged for me to have my blood tests there.

you don’t need to juggle to join this circus.

i got in just on account of my silly walk!

and dramatic falls.

carole x

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I think you have summed up perfectly a state of mind that I can well remember my own version of, even though it was a while ago. What you are feeling is normal; that’s just what it’s like in the early days, so try to be gentle with yourself and give the dust a chance to settle. You are doing OK. Alison