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latest letter from my neuro

Waiting for a letter from my neuro for over a month since my last MRI and I finally got it which ends with this…
I note that the patient has opted to start with Tecfidera which is reasonable. However, given his previous clinical history and also the recent radiological findings, in case of further clinical worsening I would strongly consider a treatment escalation to a higher efficacy medications.

That’s the end of the letter. It doesn’t say WHAT, HOW, WHEN.

It raises more questions than it answers.

Regards Carl :v:

What a stinker of a letter Carl.

How ¥#§] annoying. To say the least. Some doctors have no idea how to treat people. Or how to write a sensitive, coherent, decent letter to a patient. (Note the word ‘patient’ - you learn to be!)

I suggest you write to him/her and ask for explanations of the what, how, when questions. You could do this by just writing (old school snail mail) or phone his/her secretary and ask if there is an email address you could address your concerns to. Often this would be the secretary’s email address - your email would then be forwarded to the neuro.

Meanwhile start looking at said ‘higher efficacy medications’: MS Decisions aid | MS Trust is a good start. Take note of their anticipated relapse reduction rate and the possible side effects for each drug.

What you’d be looking at would be Lemtrada, Ocrevus and Tysabri.

One very important question is whether in the neurologists opinion you should start on Tecfidera and change drugs only if you have further relapse(s) or whether you should be starting on the higher rated drug initially.

Don’t forget though that although the neurologist may think you should be on a more effective DMD, it is still your choice. If you prefer to start and stay on Tecfidera, then that’s what you should do.

Sue (still annoyed on your behalf!! :angry:)

I wonder whether it’s because of the level of activity/new lesions?

I’m on tecfidera and have been for two years but it’s stopped working now :pensive:.

Hi Ssssue
Thank you for your reply trust your well.
I am amazed that they sent that out to me it’s like there’s a couple of paragraphs missing. I have tried to get hold of my Neuro the secretary and my MS nurse all of whom are unavailable annual leave or just busy. I a booked phone call with a “relief” MS nurse yesterday I may of well have been talking to our dog !!! the nurse didn’t have any records let alone the letter in question it was pointless having the call I put the phone down and screamed (good job we live in the middle of nowhere) I will carry on badgering these people.

Regards Carl :v:

Hi CrazyCatLady
Thanks for your reply. Trust your well I’m sorry to hear that Tecfidera has stopped working for you have you been given an alternative ?

Regards Carl :v:

Hey Karl

Good to meet you! I’m hoping to go on tysabri, blood tests next week and then fingers crossed! :pray::pray:

Hi CrazyCatLady
Trust your ok here’s hoping on your blood results. I’ve come to realise that MS is just like the Terminator it does not know pity it does not know remorse and it will never ever stop.
By the the way its Carl with a C not a K.

Regards Carl :v: