Last reply 3 years ago
What questions to ask

Tomorrow, 4 months after diagnosis with progressive MS, I get to see a neurologist. I hope to discuss possible disease modifying treatments, diet, exercise etc. Any suggestions regarding the questions I should ask?

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3 years ago

@sianroberts , all your questions are quite rightly about how to manage this condition moving forward.

You also need to get an introduction to your MS Nurse, unless this has already been achieved.

Don’t expect to much comment about diet. I expect you’ll be told that there’s only anecdotal evidence. Doctors are loathe to comment on anything unless there have been clinical trials.

You might get more comments regarding exercise, which is a definite yes, but, in moderation.

But, do write down all your questions to ensure that you remember to ask them. 😉

3 years ago

Thanks, Stumbler. Yes – I intend making a list of questions!
No – I haven’t met my MS Nurse yet. I hope I will be put on the right path tomorrow.



3 years ago

Sian (sorry cant find the squiggly thingy)

Honestly. You will get more advice from the good people on here than the neurologist . not saying they wont answer your questions. Make sure you write down the answers to your questions though.
I was Dx’d in 2007 and put on a DMT last year so things really don’t move quickly and I found it to be a bit of a postcode lottery as to who gets what.. never been informed of diets and stuff just told to go n get on with it, ive seen my MS nurse 3 or 4 times since and going to try to get on lemtrada which by all accounts (as written about on here) is the holy grail, Being as your progressive you maywell be started on something else..
Oh yes, find out your local MS society and join it , its really worth it.. I took a long time to find them out and wished I had done so sooner…

good luck in your search for answers

Kindest Regards

3 years ago

You write like this is the first time you will see a neurologist. Who the heck pronounced you as having PPMS? That is a label that you do not want and make sure a specialist was behind that DX and still fight it. It is debatable in some circles if any such disease exists. What we know for sure is that it will be used against you by payers of any potential treatments. You owe it to yourself to fight it and get yourself on an aggressive DMD. Lemtrada has your name on it. Get busy and check it out!

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