Last reply 1 year ago

Well had a chat to the nurse today to ask about the impending start of Dmt.
She was helpful with stuff but I did mention that in the recent scan I did nothing had changed. She was lucky enough to catch the Neuro and ask him bout the results. She said treatment will not happen at the moment. As the Scan shows things are stable which is good news. But he gave the impression last week at my visit that treatment is were we was going next And handed me some information to read
I’m greatful there is no progression at this stage. But since then I haven’t stopped thinking how the next step will change my life as well as famliy life. I guess like having a baby there are no manuals on how to raise them we just take it step by step.

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1 year ago

@gypsyrose , it’s a tough call, whether to start a DMT, or not.

Whilst it’s great that your MS is apparently showing no activity, MS is unpredictable. I used the term “apparently”, as an MRI scan does not give the full picture.

Yes, you’re right, we do adopt and adapt……………..

1 year ago

Hi @gypsyrose

Personally, I always say a second opinion is a good idea, especially if you and your current neuro aren’t seeing eye to eye as far as starting treatment goes. Is that something you are able to do?

Choosing/starting a medication is a personal choice, but for me I felt like it was the only proactive thing I could do at the time, so if you feel like you want to talk more about it I suggest trying to get in with your neuro again or looking for someone else you can see if possible.

All the best!

1 year ago

It’s not we don’t see eye to eye just seem to get mixed uncertainty from him

1 year ago

@gypsyrose , MS is an uncertain subject area, due to the unknown nature of the condition and its unpredictability.

There is always the enigma of Disease Modifying Therapies (DMTs), do you start them straightaway, or wait for further MS activity? That’s if you want to consider them at all!

It is probably prudent to read up on them, so you are able to have an interactive conversation when the subject arises. Here’s a good place to start :-

1 year ago

My multiple visits years ago to an Ophthalmologist for my vision problems were ignored and no ms diagnosis or testing was done. Fast forward 4 years later I have drop foot and wicked limp and weakness. See doctor and after the MRI and eventual spinal tap get put on tecfidera. Was reminded to take my DMD as if I had them years ago, likely no lesion in my spine to cause my problems. No new activity for four years but still have all the physical issues I first got back in 2012. Everyone is different. I wanted no drugs, but they are working.

1 year ago

Make sure he’s an MS specialist, many say thy are but can count MS patients by name (less than 10) my first near was exactly that experienced 7 patients in 20 years.

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