Hi. Saw the neurologist yesterday and have diagnosis of RRMS. The neurologist explained very well why she came to this decision. I have multiple lesions in my brain but none of these are in the lower area and no change on second scan, so no new activity. I have a lesion on the right optic nerve ( had optic neuritis last September which is where my journey started) but it was two lesions in my cervical spine that swayed it. I also have foraminal stenosis at c4 /c5 and arthritis. But you know what, I feel very calm about it. I had mentally prepared myself for this, so no great shock when told yes it is. Maybe it’s just not sunk in yet. Just waiting on treatment to start, which will be Copaxone plus something for the fatigue, which has/ is the main thing at the minute. Any tips or words of wisdom going forward from anyone would be great. Onwards and upwards so they say
Hi, sorry to hear about your diagnosis but I wish I’d sounded as strong as you when I got mine!!
DMD… tick. Balanced diet, exercise in moderation, rest and treat yourself. Humid weather knocks me out and I’d try and avoid stress which I know isn’t easy.
Sounds like you have a good neuro and hopefully you have access to an MS Nurse if you need it in the future.
Take care and stay well.
Val is right, you do sound very calm and organised about your diagnosis.
A drug for fatigue is often a really good thing to have. There are two potential drugs, neither of which is strictly speaking ‘for’ MS. The easiest drug to get prescribed is Amantadine. It’s actually an anti-viral drug that accidentally was found to improve people with MS’s fatigue. It can work very well for some people. The best fatigue fighting drug is called Modafinil though. That is licensed for narcolepsy, but it is very good at reducing fatigue in people with MS. But there have been some concerns about cardiac problems in a few people, so it’s not so easy to have it prescribed. It’s also been used both recreationally and as for eg, a study aid for students. It’s worth asking for though. I took both at different times. Amantadine worked well for some time, then just seemed to stop doing its job, so I switched to Modafinil (this was years ago so much easier to come by).
Equally, if you are experiencing a lot of fatigue, there are techniques and strategies to manage your fatigue. Have a look at https://support.mstrust.org.uk/file/living-with-fatigue.pdf
Copaxone won’t take too long to get organised. It’s an easy drug to take, with minimal side effects, although injection site reactions can be a flipping nuisance. A nurse from the Copaxone Connections team will come out and teach you how to inject yourself. Don’t worry about the injections, the needles are tiny, they just go under the skin and don’t hurt (honest). So long as you rotate the places you inject, any reactions will dissipate in time and hopefully the drug will do wonders for you.
You should also be given the contact details of an MS nurse. I can’t say too often that a good MS nurse is worth his/her weight in chocolate. I often just email mine with a question and get a fairly speedy response. If you’ve not been given details of your nurse, try phoning your neurologists secretary and ask for the information.
Obviously, an MS diagnosis is what you were anticipating, so in some ways it probably seems like a relief to have a name to what has been happening to you. But don’t be surprised if your mood is a bit changeable over the next days/weeks/months. You may feel a degree of grief over the diagnosis, or furious anger (a dam good swear is often called for), or feel somewhat depressed over it. You don’t have to be strong and ‘accept’ this change to your life too quickly. Some of us still feel like having a good old ‘why me’, ‘it’s not f’ing fair’ session from time to time.
Just come back to us if you need help, advice, answers. But remember, we only have our own experience to guide us. We’ll do what we can to help.