I’m sat around this morning waiting for my first delivery of DMT’s and you’d think I’d be more excited. I fought for years to be able to see an MS specialist in my area who questioned my diagnosis of SPMS and recommended I start DMT’s again straight away.
This is all progress and I feel pleased there are medication options open to me now but I can’t help having mixed feelings about starting treatment.
I won’t mention what I’ve been prescribed as I don’t think it would make any difference to how I feel. So what exactly is my problem?
It’s partly due to all the changes I’ve made over the last few years and putting my faith into medication rather than having the control myself. As I was wrongly diagnosed with SPMS a few years ago I stopped injecting DMT’s as they weren’t effective for SPMS and they made me feel dreadful for 5 days out of 7. I looked for alternatives to medication to regain some control over my prognosis. I dramatically changed my diet and have improved my fatigue, strength and stamina as a result. I’m also 3 stone (42 lbs) lighter and have dropped 3 dress sizes which helps me lug myself about! I’ve also started gentle exercise which will hopefully improve my balance and strength.
Facing SPMS helped me accept my condition too. Rather than hiding in denial and putting my faith in medication I got myself a scooter and a part time job and got on with my life!
I’m also nervous about side effects. Lately I feel so good even with my lack of mobility and other symptoms. I feel apprehensive about introducing stong chemicals into my body that have the power to make me feel bad as well as doing long term good. I know the side effects can be lessened by over the counter medication and being prepared for what might happen. I also know that not everyone suffers with side effects and that they usually have less effect over time but I still feel anxious about it.
I mentioned my fears on social media and someone people pointed out that I shouldn’t be starting the treatment if I don’t want to take it as these drugs cost the NHS a fortune and some areas have long waiting lists so I should be more grateful for the opportunity I’ve been given.
Given how much I’ve had to fight just to get seen by a specialist who knows anything about MS I couldn’t care less how much it’s costing! Harsh but true. I should have been correctly diagnosed when I went to my neurologist with worsening disability years ago! If I had I would have been taking DMT’s instead of figuring it all out for myself.
Anyway, I won’t start ranting. I will wait for the doorbell to go and see how I get on. Does anyone else feel anxious about medication?
budding communications 
Hope the drugs help. Sod those who say about costing so much. They were developed for a reason and anybody needing them should have access if there is the possibility they will help. To anybody complaining about cost, let’s hope they didn’t vote for a government that blocked access to off patent medication (which had the opportunity to save the NHS a lot of money) and some of whose members accept positions on boards of big pharma and accept money from lobbyists while not caring what their constituents best interests are. Worst case scenario, your dmt makes you feel bleurgh/ not help. Then you stop and try something else. Lots of choices out there now.
Hi, thanks for your comment. It did make me cross as no one knows the personal journey you go through before you decide on meds do they! I agree cost shouldn’t matter