DMD Fears -looking for reassurance

[Michelle7070]

Good morning all,

 

I am new to this site, I have been diagnosed with MS for 3 years and on the whole I have manged the minor relapses well, I hold down a full time job am a Mum to 2 Kids (well they are now in their early 20's) and have a fantastic husband.  Last month I had several areas that seemed to be attacked at the same time, to the point I was taken into hospital as they thought I was having a stroke (fortunately not!).  At 50 (well nearly) I am having to walk with a zimmer frame and looking like I have drunk a liter of Vodka on an empty stomach.

 

My consultant is now recommending that I have a Disease Modifying Drug, I really cant remember the name of the drug he is suggesting, but I have to say that I am now terrified of this treatment.  I know that they have to give you worst case scenario.... but......

 

I don't have anyone in my circle of friends or family who suffer with MS let alone gone through this treatment.

 

Can I ask if there is anyone that has gone through it and how it has improved their life with MS.

 

Thank you in advance for your support.

 

Michelle

[Stumbler]

Hi @Michelle7070 and welcome.

 

The concept of adopting a Disease Modify Therapy ( DMT) is somewhat daunting. They are powerful drugs, but as you now know, MS is a powerful condition. So, you have to weigh up your concerns about a DMT against your concerns about the impact that MS can have on your overall quality of life.

 

The range of DMTs has been increasing over the years. There's "Maintenance" therapies, which can reduce the frequency and severity of future relapses, which have to be taken regularly. And, there's now "Immune Reconstitution" therapies, which are taken less regularly and reset your immune system, to try and stop it attacking your nerve coatings.

 

There's a lot more detail here :-

 

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf

 

[Michelle7070]

thank you so much for the information, I really appreciate it.  I will take the time to read and digest it all.

 

[Nick]

Hi Michelle,

 

This is a tricky question.  The first point I would make is about understanding the role of your neurologist and how you view their role/ability in being able to help you. Dealing with my own MS and the experience of being under the guiding hands of neurologists, is that their capability and recommendations come from a huge amount of understanding of the subject.

I know that it took me many years to properly be able to evaluate and understand my own MS and there were times when I didn't understand why particular treatment methods were advised.

I was on a trail for 2 and 1/2 years using the DMD drug Natalizumab  and know I was using it for at least 6 months.  The point being that prior to a drug being allowed to be used it does go through a rigorous regime of trails and tests.  This does not make it totally safe, but does allow the calculated risk to be low.  

So these really are the factors you need to weigh up.   How much do you value the consultant's knowledge and how much do you 'trust' the possible improvements, over the risk of taking a particular drug? 

My own view these days is that I stick to the sound knowledge of the professionals, avoid everything else from dubious sources, and always take a chance that by trying something that is properly suggested, then it may help me.

  

 

Hope that helps 

Nick 

Edited 17 Apr 2019, 4:40 pm by Nick