I was diagnosed with RRMS in March the week of lockdown after I visited my GP with numbness in my legs. Having had an MRI in 2015 for severe back pain I was told that it was probably my discs moving further but the MRI showed lesions in my brain and spine.
I’ve just had my first consultation over the phone with neurology and although she’s going to put it in a letter, she said that I had options for treatment. She mentioned some names (tecfidera, interferon and copaxone) and I am thinking about which way to go but thought I’d say hi and introduce myself.
I am just turned 40 and live with my 8yr old son and my partner of 17yrs. Fatigue is a huge issue for me as I went self employed in 2019 after 22 yrs in an office and am now loving being a gardener and woodworker. Any hints or advice for this newbie greatly received
Ach. wrote you a reply and promptly lost it! Can’t help with the decisions, I’m afraid, I started on the interferon (Rebif) as it was the one which scared me the least, until they decided it wasn’t doing the job, and suggested I try Ocrevus instead. Not unhappy at not doing injections any more (not good with needles). The only hints I can suggest are Be Kind To Yourself, and when the fatigue kicks in, and you need a nap, just sitting in a comfy chair with eyes closed for a few minutes is more convenient than actually going to bed… can be done in the office, don’t ask me how I know that…
Oh, and welcome to the Band of Outstanding People, by the way!
Hi Jim and welcome to the gang!
I`m PPMS…long way down the line (22 years) so I was never offered any DMDs.
But my advice as to day to day living goes like this;
be kind to yourself
never beat yourself up about having MS…it chose you, you didnt chose it
take rests whenever you can ie dont over do it…gardening is a heavy hobby/work
always accept help if you could use it
try not to google too much…it can make 2+2 = 5!
live the best life you can!
Thanks all! I guess it’s the club that no one wants to be in eh?
Appreciate the welcome and the advice.
I would like to echo what the others have said.
being kind to yourself includes planning in time for a treat. (this could be a couple of pints/ a weekend away/ whatever floats your boat)
pace yourself, once you get used to the devil that is fatigue, you’ll begin to know when you’re at your limit.
as for the meds it really must be YOUR decision.
enjoy your new career, you will get lots of Vitamin D by being outdoors which is really important for people with ms.
dump any stress, including people/situations that cause you stress as you will soon realise that stress just makes all symptoms worse.
enjoy your life!
Welcome to the forum and the club that no-one with any sense chooses to join!
Commiserations on your diagnosis. Particularly during this world of Covid. It makes building relationships with your MS nurse / neurologist / other medical professionals extra hard.
With regard to drug treatments, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid It details all the available disease modifying drugs (DMDs). In particular look at the potential side effects having regard to the anticipated relapse reduction rates (this is what a DMD is designed to do, not cure your existing symptoms, but to reduce relapses and the severity of relapses).
One thing to bring up with your MS nurse / neuro, is the possible side effects from Tecfidera. One fairly common side effect is depleted lymphocytes. These are a type of white blood cell which fight viruses. Ask them how open to potential viruses you might be if you had that effect. In particular, Covid. If they are willing to prescribe it while giving you frequent blood tests to check your white blood cells, with a view to stopping the drug at an early stage should the bloods indicate it, then I would go for it.
The reason I’d still recommend Tecfidera above the other drugs is the potential relapse reduction rate. It’s 50% as opposed to about 30-35% for the other (injectable) drugs. Which still have possible side effects. But the better relapse reduction rate might make it worth it for you. Just make sure you make the ultimate decision, not your MS professionals.
With regard to your fatigue, that’s something you need to get your head around. It’s something that goes with the diagnosis for many of us. See https://www.mstrust.org.uk/a-z/fatigue Managing fatigue is important, you can’t just ‘power through’ MS fatigue that you might have done pre MS days. You need to listen to your body, being a father and having physical interests means you’ll need to manage what you do, having rest times as needed.
This community will help as much as we can, don’t try to gain knowledge of everything MS related too quickly. Honestly, it takes years to wrap your head around it. Don’t worry about ‘accepting’ your diagnosis or ‘coming to terms’ with it. It’s OK to be scared, worried about how it will affect you and your family, and downright furious that this intruder has snuck into your life uninvited. (I’ve not forgiven it yet and it’s been more than 20 years!)
Can’t thank you all enough for your help and advice, lots to read
really appreciate it
Sent you a private message.
Hi Jim, Now is certainly a difficult time to get diagnosed with all the NHS changes due to covid although it never feels like a good time. I was diagnosed in Oct 18 and started DMTs in March 2019. I decided on Avonex and so far so good. My last MRI showed no new lesions and now I’m in a rhythm my weekly injection seems routine. I sleep through my side effects mostly so I could recommend Avonex. I used the MS Trust literature to help inform my decision with help from my MS nurse. Good luck with your choice. I found it to be a big decision but once I reached it I felt a sense of relief. Cheers Jo