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How quick did u get DMDs?

Hiya, just wondering how soon did everyone get there DMDs? I saw neuro when he told me it was def MS… then had to wait it out to have my baby… baby is 11 weeks now and after chasing the hospitql through a horrible relapse (and not getting anywhere fast) I finally got an appointment through last month for 30th April (8 weeks after i started chasing them!!)

Im wonderng will neuro start them straight away then? He has written a letter to my doc when he last saw me saying he would see me at his DMD clinic for this, but I dont know wether Im gonna have to have another appointment after to get the medication as he also wants more MRIs, to “assess new disease activity”…

bump

I saw neuro early Feb and had a letter last week to go and see the ms nurse this Fri to discuss my DMD.

From other posts on here I have seen that people then have to wait a number of weeks before they start as the process has to be set up.

Will let you know after Fri if you want but Im in the midlands and I guess its different everywhere.

Hope you get sorted either way as it must be hard with a baby and relapse at the best of times.Ive no doubt you are like I had become waiting for the postie every day.

All the best .and was it a boy or girl?

Pip

The “Rule of Thumb” for DMDs is two clinically isolated incidents inside of two years.

So, an onset and a relapse in six months would qualify, but an onset and a relapse in 18 months would not. New lesions count as a clinical incident, so that is probably why he wants another MRI. There is no clear guide that I am aware of about just what “clinically isolated” means, but it does seem to need some separation in time.

It looks like your Neuro is on top of the situation, so hope it all goes well next Monday.

Geoff

I would recommend you keep breast feeding to keep any relapse at bay. I hope you did get BFing memo with regards to MS right?? It takes about 8 weeks to get drugs but then again I got mine before the Tories privatised the NHS good luck!

Hey, thanks all for your replies…

pip - Im also midlands so might be around the same :slight_smile: and it was a little boy hes so amazing :slight_smile:

Doctor Geoff - Neuro has counted and in a letter to my GP states that he counts 4 relapses since my symptoms began in August until I saw him first in January, plus this one since baby was born makes it 5. Ive only had one MRI of my brain as I was pregnant which showed a good few white spots… but he says my symptoms are related to spinal lesions which wasnt scanned so Im assuming he expects to find more there.

MercuryMoore - I had to stop breastfeeding when he was 2 weeks old as it was then discovered he had major heart defects and had to have open heart surgery, he wasnt gaining weight very well on breast milk after so has had to switch to special high energy food. Also my MS began whilst pregnant, and also wasnt showing any signs of going anywhere… so probably wouldnt have done me much good unfortunately. I had a horrible relapse whilst he was in the hospital, probably down to the stress of everything! Shame because breast feeding was something i was enjoying and really wanted to carry on with… but it just wasnt going to be right for him.

I got my diagnosis in July and started DMDs November. They wanted to see what was happening with my lingering relapse before they started me on them, I was happy with that, didn’t want to be on drugs if I didn’t need to be.

Just to let you know this thread has helped me massively!! THANKYOU!!! Have been panicking due to dx 2 weeks ago and not seeing consultant re:DMD’s til end of June, this seems about same length of time as you guys have experienced. Also awaiting a third MRI (they diagnosed me after 2 with masses of lesions in my brain and cervical spine…polka dot brain matches my outfits!!) Also still awaiting MS nurse appointment…anyone else you can recommend I can get in touch with for extra support? I’ve seen social services somewhere but it feels a little extreme!! Ophelia xx

Valid, DMDs were what he said he would see me about when he Dxed me in January… wonder if I’ll get them sooner…?? Seeing as its already been 3 months!

Hope your littleman is doing well after his surgery no wonder you relapsed with all that worry.

All the best

Pip

ps to narrow down the field I go to the QE in Brum…but I am a blackcountry lass!!!

Hi, I was diagnosed around July time and was on rebif by the end of September.

Hope your keeping well.

Kelly x

Oh Pip…Im going to QE too! lol Who do you see?

I have pm you