I got a call from my neurologist yesterday confirming they have found new spots on my brain from my second MRI and so I have been diagnosed with MS. the next step is going in to see him to discuss where to go from here regarding treatment. Does anyone have any advice regarding the medication on offer? Should I try it or wait for my next episode?
Feeling a bit lost right now.
Hey there x
This is my first post! Been to see neuro today and he says I don’t qualify for treatment at the moment, going back in six months to see how things are. It’s so tough hey, I had my first episode four years ago which was passed off as a random nerve and now had various things going on since last December. Also feeling lost.
Well, it’s a very personal decision, but my priority was always to try to dodge the next episode rather than to wait and see what delights it will bring! MS doesn’t tend to do nice surprises.
The information on the main part of this MSS web site is a good and reliable source of info for starters, but you probably know that already.
I am sorry that you have joined the club that no one wants to join. It is always tough news to hear, even if it isn’t a surprise. Be gentle with yourself, and don’t worry if your emotions are a bit wayward - that is completely normal. This is a difficult time for you, no question, but you will find your way through and reach calmer waters. Life goes on, and life with MS is pretty much like life without MS - a bit trickier, but still good.
Hang on in there.
ALison
I think Alison has given good advice. But I would add that the evidence is that getting treatment earlier rather than later if your MS is active is shown to have a better outcome by large studies . Nobody has average (mean) MS and MS is unpredictable but the big studies (with lots of people) do show what the chances are. British neurologists seem relatively reluctant to prescribe. So if you qualify I would take it (I did when DMT was offered to me) to try to dodge the next episode.
Remember the DVLA must be notified of the diagnosis of MS they don’t really do anything but the law is that driving licences must be renewed every 3 years. Driving insurance must be told as well (change of circumstance) but premiums are not allowed to be changed.
If you have critical illness cover there may be a deadline for claiming.
Best wishes.
Jon.
I’ve just had my second MRI after the first one showed 12 small lesions but my LP came back clear hence the 2nd MRI … I was just curious as to did u have a LP ? And if so were your results neg ?
Thank you so much for your comments, it really does mean a lot to me and to hear from people in the same boat. Alison, thank you very much for your message it is extremely helpful and I will get on looking into the treatments ASAP. I was confused as my neurologist originally told me that even if I was diagnosed I would not go on treatment straight away but when he called me a few days ago (to tell me it was now official) he told me that he wanted me to come in as I could then decide whether I wanted to begin treatment. So very confused but I guess I should just wait and see what he says.
Thank you also for your kind words. I have to say it has not been easy, but it is hard to explain why it has not been easy as for the most part you feel fine! I guess that is why it is so hard to come to terms with and, ironically, makes it hard as it just feels so odd to know something is not going right inside you and it will effect you eventually… but not today. I feel that’s what I have to keep remembering. At the moment I am trying to complete my Masters degree and am finding it very hard to concerntrate (I am writing my dissertation at the moment, sitting by yourself with a lot of time to think about other things apart from your work is lethal.) As i said though, now just knowing what is going on is a big relief.
Jon, also thank you so much for the information I would honestly have never have thought about that. Do you know anything about applying for a blue badge? I feel absolutely ridiculous even thinking about it but I live in London and more often than not choose not to drie anywhere because of lack of parking and so have started to think that maybe a blue badge would prove extremely useful? I don’t know I feel silly now writing it down!
I’m sure you have seen this in the news but just incase, very encouraging article:
Cody, unfortunately I do not know what an LP is… so i’m guessing I didn’t have one
Thank you once again xx
I don’t know where to post this but I need some feed back.
I have had two “episodes/flareups?” this summer. The first time,at the end of June, I went to the beach and it was a very hot day. A few hours later I was home cooking supper and first my left arm started to go partially numb, then my left leg, then the left side of my face. I have had a lot of back problems, sometimes my back goes out and my face and arm goes a little numb. But this felt different, like it was coming from my muscles instead of my skin being numb. So later on that night, I was reading and I thought I got bit by a horse fly on the top of my right foot! it hurt, but there was no bugs around. I (in that 10day to 2 week period) experienced double vision, hard time trying to urinate, blurry vision, ear pain and short term (1/2 to 1 hr) hearing loss, muscle twitches, burning and ripping sensations in my legs, vibrating (like a cell phone) in my chest muscle, weakness with muscle contraction in my bicept while texting. The second time, end of August, it was cold so I decided to use a top sheet ( I don’t use one in hot weather because it makes me sweat) well I woke up drenched in sweat. I got up to use the bathroom and felt numbness on my left side like before and it felt like I had duct tape stuck on my left heel. I am currently having weird random thigh pains, twinges, numbness and tingling in left finger tips. Does this sound like MS to anyone? I have an MRI with contrast in 3 days and I really hope I get a clear yes or no answer.