To start DMD or not?

Hi friend, I have been diagnosed with RRMS for 4 years. Since the beginning, my only symptom has been right side of body numbness. It started from my right foot and gradually my entire leg, hip, side and right hand. My husband and I were trying for a baby when I got my diagnosis. We challenged with infertility for 5 years and finally conceived trough IVF. I gave birth to my daughter who is 6 months old now.

I have not been on any medication so far because of my pregnancy plan. Also my neurologist told me because you have just sensory symptoms, you are not eligible for DMDs. I had had very minor numbness during pregnancy and generally felt so good MS wise. After giving birth, my numbness got worse. It was manageable until 6 month postpartum. Right now it is so bad and I have very annoying numbness and tingling sensation. I never had this sever sensory symptoms since the start of my disease.

I will have an appointment with my neurologist in January. But before that, I wanted to know if anyone else had any experience. I talked to MS nurse and she told me you are not still eligible for any DMD and they probably are not going to help with sensory symptoms. I am very worried about disease progression and also cannot stand this annoying feeling. At the same time, I really don’t want to start medications. I am breastfeeding and most probably have to stop feeding my baby if I start any medication. I know that everything about MS is uncertain and even doctors don’t have clear answers and they will probably say it is you decisions. I am really frustrated now and don’t know what to do and if I can do anything to to help myself. Sorry! I typed a lot. No body understands what we are going through unless ones who experienced themselves.

Hi Spring, there have been a few similar debates on this blog recently and the general consensus has been that it is better to start a dmt than wait for your MS to potentially worsen. If you type dmt into the search function then you may be able to find them. Absolute rubbish from your neuro regarding not being eligible with only sensory symptoms. I would probably ask your nurse about which ones you’re eligible for so that you can go in to your meeting in January fully informed. Can’t help you with the breastfeeding I am afraid (male) but my wife tells me all the goodness ) benefits to the child are within the first 6 months so you’re over that hump at least. Good luck

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Hi Spring

I’m fairly certain that one of the injectables, such as rebif, copaxone and lots more but they are lost in my brain fog.

There is a lot of info on the MS Trust site.

As you aren’t breastfeeding you will have more options.

Good luck and congratulations on the birth of your baby.

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Hello

I think it’s Copaxone that you can take and breast feed on. Certainly you can take it during pregnancy. It’s a low risk injectable DMD which is mostly well tolerated (so long as you properly rotate injection sites - Carole will tell you what a bad idea it is not to rotate sites!)

Have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

As far as I’m aware, what you’ve been told about not qualifying for DMDs is rubbish. The point of a disease modifying drug is to reduce the number and the severity of relapses. They don’t reduce the symptoms you already have from previous relapses, that’s the point, they are not a cure! You don’t wait until you have a disabling relapse before starting a drug. What’s needed is a firm diagnosis of MS (or even a Clincally Isolated Syndrome aka CIS) and 2 relapses in the past 2 years. These relapses don’t have to be severe or even ‘motor’ relapses. If you’ve had relapses then you should be able to get a DMD.

It ,might be worth looking at the NICE prescribing guidelines for DMDs: https://bnf.nice.org.uk/treatment-summary/multiple-sclerosis.html Theres nothing said there about the types of relapse you’ve had in the past.

Best of luck

Sue

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Thank you all friends. I live in Canada. I don’t know if these drugs on MS trust are all available here. I am sure Copaxone is available and a commonly used one. I need to do my reaserch before comming to any conclusions.