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Newly diagnosed,

Hello!

My name is Claudia, I'm 25 and I was diagnosed over a month ago with RRMS.
I decided to get my tests and consequent diagnosis done in Italy, where I am originally from, as things here were moving super slowly and I have felt pretty let down by the doctors I have seen in the UK.

Since my diagnosis I tried to get the ball rolling here as well as my neurologist in Italy suggested that I should eventually start Tecfidera (she said that it wasn't urgent, whatever that means) but she would like that I was prescribed it from a doctor in the UK as I would need to be monitored, and moving between countries it's quite complex right now.

After 3 weeks of chasing I was confirmed an appointment on the 2nd of December, is it me being very unlucky and experiencing all of this waiting time because I live in London or is it similar everywhere else? On that first appointment will they simply accept my original and translated diagnosis and prescribe me the same meds? In my worse nightmares I have to do the LP again.

In all of this I have just started my final year in Uni, in a course I have put so much effort and dedication in. I am starting to feel the pressure of all this life changing events happening all at ones. I have worked so hard to get where I am and now it feels like the ground beneath me disappeared. I really feel so frustrated at times. I have started seeing a therapist and I'm looking for a support group but it seems quite hard to access to even online ones:(

If anyone has any uplifting MS story to share, any good advice and wise words, I'm ready for that.

Thank you and hope you are all keeping safe!

Claudia

Hi Claudia, well I am not sure, but I would imagine a UK neuro will want to repeat the tests that were done in Italy. Apologies if I am wrong, but that`s my feeling.

NHS waiting times are long and now even worse due to covid reducing staffing levels.

I always feel saddened when I read about a young adult being diagnosed with a serious condition. I was 45 when my symptoms began.

But let me tell you that with the right medication, good support and taking care of yourself, will all allow you to have a good life.

MS is not a death sentence, but a life sentence.

People with your type of MS can live well and providing you get good rest, plus good meds, life will pan out with a just a few adjustments.

There are many people here who have proved this to be true.

There is a way to see a UK neuro more quickly. That is going down the private route. But you probably wont see anyone before 2nd December anyway. That isnt that far off.

Take care yeh?

Boudsx

 

Claudia, I am sorry that you have had such an unwelcome diagnosis.  Most of us will remember well the feeling of life falling away beneath our feet and the feeling that all the hard work has been for nothing.  What I can say is that those difficult feelings will change. Humans are remarkably resilient creatures, and we are much better than we think at adapting to changed circumstances.  The qualities and temperament that make you the young woman you are will come to your aid as you adjust to a 'new normal'.   A person can make a good life for herself with MS, and I feel sure that you will find this, as I have done.  

Good luck with it all.

Alison