Last reply 4 days ago
Disease Modifying Therapies

Hi, my MS has progressed & tablets are no longer working so i’m going to be starting disease modifying therapies & just wondered if anyone could give some advice/thoughts? I was diagnosed in January 2015 but the stage i’m at now has got my head all over the place. Finding everything completely overwhelming & not been in a good head space for a while. After speaking with my MS nurse recently i realise i haven’t dealt with the emotional side of my diagnosis at all, 23 at the time & just couldn’t deal so have done everything to avoid it. Feeling a bit lost facing the next stage & new treatment. Just wondering if anyone can offer advice? X

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stumbler
1 week ago

@sarah_walton , it’s perfectly normal to feel as you do. Having a condition like MS can seem like a huge burden.

It depends on your Neurologist as to what Disease Modifying Therapies (DMTs) are offered to you. There seems to be two types of Neurologist, the conservative one that wants to start with the least effective DMTs and the proactive one that wants to use the latest, most effective DMTs.

It is because of this that you need to be aware of what is available and what suits your lifestyle needs.

The following may help you:-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid and

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


sarah_walton
1 week ago

@stumbler im meeting with my MS nurse in the next week or so to discuss which one is right for me. It’s just scary having the unpredictability of MS hit home when you move onto the next step. A lot of information is thrown at you & it’s overwhelming. Thanks for the links i’ll take a look


stumbler
1 week ago

@sarah_walton , life itself is unpredictable, so we’re really no different to anyone else.

Unfortunately, there is a lot if information. But, we do have to do our research so we can have discussions where we play an active part. DMTs should be a case of a mutually acceptable agreement, not an imposition.


cameron
4 days ago

I think you’re going to have to bite the bullet and start trusting the medics. They’ve seen it all before and know all the angles. Do your reading, write down all your questions and be prepared to ask for time to make your mind up after all those questions have been answered. One thing is reassuring, though: being on a DMT ensures that you are being monitored. In effect, that means that the worries that you may have are checked out by someone else on a regular basis. There’ll be the actual tests (e.g. bloods, MRIs) and also the opportunity to discuss and ask more questions as part of a routine. My experience is that this helps with every aspect of the illness, not least because you know you’re not facing things alone. xx


nutshell88
4 days ago

personally, Im not the type that depends 100% on treatments
of cours we better get treated but if our minds are not feeling strong facing the disease with a sense of inner strength be confident that you can beat it x

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