I’m so sorry, I forget you had sent me something Carole, that I had not replied to!
There’s a part of me that thinks 12 months was quite a long time before starting a DMD, but conversely I have also read some peoples’ thoughts that if you don’t have bad relapses, or many effects currently, why bother at all!
I am using the time to occasionally do a bit of research, and to try and have information available to me so that when I have my appointment with the MS nurse (in one month’s time - appointment arrived!), I shall hopefully not be a clueless compliant ignorant patient. Nothing wrong in that, but I’d rather not be!
Perhaps one shouldn’t run through the list of treatments and treat it like a shopping list, but for me, and my job as a train driver, the side effects, treatment administering regimen, and effectiveness seems to point at Tysabri.
Cat 2.0 and a more recently designed drug than most of the interferon drugs, without having to take vials of medicine and worry about keeping them refrigerated on holiday flights because it’s just a monthly IV routine, it is the one that makes the most sense to me, with the level of knowledge I currently have. I will probably make a post about this to enlist the help of some people who may not see my request if I just put it here, but I wanted to answer you and say thanks for your message.
I was diagnosed last week. The next day I called the ms nurse (number from google) and she contacted the neurologist who said to get me in to the next available clinic. I feel that if I didn’t get on the phone I’d not even have heard anything yet.
i am in Northamptonshire.
Id say to chase things up because that is a long time to wait
The polite British side of me says I shouldn’t try and push in, LOL, so I was prepared to wait but after 3 weeks and I’d nothing from the MS nurse, I did give them a ring. I did get the impression that I might have gone un-noticed from a CC on an email, but then received assurances that I would hear, and as I say, I’ve got an appointment now.
I assume, perhaps incorrectly, that for one reason or another, I’m not an urgent case. Or perhaps Kent are struggling with the numbers?
Hi Nev, sorry to hear you’re struggling with the waiting, that can be horrible. I think I fell into the camp of “benign” MS so there were no meds for ages. Then I had one whopper of a relapse, chucked some steroids at it and went back to normal. It was only when I had my second, teeny tiny relapse, that there was mention of what I refer to as “The Good Drugs”. As soon as that happened though it was very quick - my MS nurse was brilliant, talked through all the options, but ultimately you have to make your own mind up depending on what will suit you. I started with Avonex, injections were fine and just a few side effects but I had to stop because I caught something else manky, which wasn’t even MS related and put me in hospital!
I changed then to Tecfidera, was terrified of the possible side effects, but fortunately the very minor ones wore off quite soon and I’m now a firm advocate. That’s the important thing to remember - with MS you have to be your own advocate; there’s a good chance that if you are, you’ll end up knowing more about the disease than your GP who may only have a couple of patients with it on their books.
Finally, once you get to know them, your MS nurse should then become your new best friend
Hope this helps, but everyone on here seems great, so keep asking questions.
Cheers Smidge, you’ve made awfully light of that “whopper of a relapse”, not looking forward to one of those
A big thing that keeps me from moaning, certainly out loud, is my best mate for a lot of years, who just pulled up to the side of the road in his lorry a few years ago, and quietly died of a heart attack. I figure if he had had a choice, he would have taken what I’ve got, no worries.
So, going forward, knowledge seems to be a fine thing to strive towards having. I look forward to meeting the MS nurse, and my consultant seemed a really nice and clever chap, too.
