mightymichymac 29/03/18
Last reply 3 months ago
First Appt since DX

Hi All

So i (finally!) have my first appt next Tues to see someone since my diagnosis in Jan and not really sure what to expect. I’m not even sure if I’m seeing the MS neurologist (the Dr that diagnosed me was a general one) or a nurse as my letter just states ‘someone from the MS Team’!

Will I be offered DMDs at this stage? Or am I jumping the gun a bit? I’m super keen to start on anything as I’ve had no relapses since my initial one and want to do as much as I can to keep it that way for as long as possible!

I am still waiting for my LP apt to come through so maybe I won’t be able to start on anything until it comes back positive/negative.

Any thoughts on what could happen at apt?

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bas76
3 months ago

Not sure how it works with LP as I was diagnosed in 2016 using CAT scan but my experience and what I was told you need to have had 2 or more episodes separated by at least 1 month before you get put o DMD’s. In my case first symptom was loss of feeling and movement to one side of face. Approx 4 weeks later double vision plus I had funny feeling in hand and numbness in leg but I don’t think they count as being ‘major’ enough. Good luck with ur appointment.


potter
3 months ago

I was diagnosed by a neurologist but I was unprepared for my first meeting with him about my diagnosis. The first question he asked me was what DMT did I want to take. I hadn’t read anything about them and didn’t know which ones were available to me. It is different here in the US when it comes to DMT’s. I thought he was going to pick it and subscribe it to me, I had never had a doctor ask me which medicine I wanted before. My first visit was kind of a waste of time. So I did my research and rescheduled. Do some research and at least be familiar with the treatments, he might suggest one that you think is not right for you. Potter


mightymichymac
3 months ago

I think that’s the general consensus that i can see is that you have to have at least 2 relapses before starting DMDs but my initial neuro (a general one) said that they would ‘word the results’ so that I should be able to start treatment asap. Btw my MRI showed 2 old lesions and one enhancing so maybe that makes the difference!

Having said that….I’ve been referred to another Neuro who might have a different opinion!

I’m just impatient is all! 😀


stumbler
3 months ago

@mightymichymac , I would question the need for a Lumber Puncture. You have your diagnosis, so this procedure seems superfluous.

The Lumber Puncture shouldn’t be necessary to start DMTs either. But, it would be prudent to read up on DMTs, so that you can participate fully in any related conversation. The following should help :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf


vixen
3 months ago

Hi there. So, when I get an appointment with ‘someone from the MS team ‘ it’s for blood, weight and urine, but that’s related to me taking Tecfidera. It might be to meet with an MS nurse, or discuss DMT options. Which hospital is it with ? X


mightymichymac
3 months ago

I’m not sure why I need the LP either tbh! I’ll ask if it’s necessary at the apt.

@vixen oh I hope it’s not just a routine check. I’m at Hillingdon Hosp (West London), the previous neuro left last year and the new one started in Jan so maybe my appt was scheduled before they actually started. We’ll see on Tues I guess!


potter
3 months ago

I didn’t have a second relapse or a lumbar puncture before I was diagnosed. My neuro told me between all of the lesions I had and my family history of MS I didn’t need a lumbar puncture. It was evident that I had MS for quite awhile. Potter

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