RR MS - Not on Meds yet....

I have RR MS & have only been dx in June. Since then I have had 2 rounds of steroids (June & August) I am only 27.

Symptoms are really up and down for me - I find coming up my period each month really triggers all my symptoms to flair up. (not sure how to cope with this each month !?!!)

For the past week I have had NO symptoms! (Well , slight balance issues but It isn’t out of control) I have been feeling like my old self & its been great. I hope this lasts for a bit longer! At least until after Xmas. It’s weird though feeling like the old me!

I meet with a second Neuro in a different city for a second opinion. Should I get another MRI done for this ? My last brain mri was in June and it was what got me diagnosed. does anybody with RR MS not take any medication for it yet? If this new doc recommends it for me I might begin but I’d like to have a second child , so maybe I should first before starting anything …

I hope by me not being on meds isn’t causing more harm internally.

Hello

Long may you continue to be virtually symptom free. Early in the course of my RRMS, I had very long periods when I was symptom free. I’d have small blips, like having a spate of spasms every night for a while, or falling over (generally blamed on clumsiness and/or being a bit pished).

But, it is a good idea to be on a disease modifying drug (DMD) if you can. You might be interested to know that Copaxone has been shown to be OK for pregnant women to take: https://multiplesclerosisnewstoday.com/2017/05/08/study-indicates-relapsing-ms-patients-can-use-copaxone-without-harming-fetus/

If you are seeing another neurologist for a second opinion, I imagine s/he would either want to see the original MRI scan or have another done. They couldn’t diagnose (confirm or refute diagnosis) without seeing a scan. If you can get a copy of the original scan from the hospital where it was done (maybe phone the MRI department? Chances are they’d charge you for a copy on CD, but it should be possible), you could post it to the new consultant in advance of your appointment, together with an explanatory letter.

Best of luck.

Sue

Hi,

yes steroids are great at start but may ruin your stomach if used to much , if or when offered drugs then

go for it sooner than later , no cure but keep any progression in check . Myself there was limited effectIve drugs

at start but since I’ve used tysabri which i found to be good but being jc+ meant a change so then fingolamod

again results great

Don’t wait there are helpful meds out there

good luck Simon

MMB, good info above.

I have no knowledge or opinions relating to MS & pregnancy or the various drug therapies and pregnancy, your medical team should be able to help with info & opinions.

I do however have an opinion on drug therapies. If you can find one to fit your circumstances & condition I suggest you go for it. It is not yet possible (I believe) to repair any damage caused by relapses, with drugs but it is possible to reduce the frequency & severity of relapses / attacks.

When I was diagnosed with RRMS, there were not so many therapies and it proved cheaper (in the short term) for my health authority to employ a “let’s wait and see” policy backed up with steroids when the relapses happened.

As the potential drugs available at the time were not up to much I do not think many avoidable problems were caused for me. However with the drug therapies available today it would be a shame to sustain more damage if it is avoidable.

All the very best to you & your family

Mick