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@Melanie_Turner 

Last reply

Melanie_Turner

Newly Diagnosed & Struggling

I was diagnosed in August, having had pins and needles in my hands and feet for a year, and never really expecting the worst (I was expecting to be told its my anxiety). So shell shocked to say the least, and still shocked, but sadly my MRI was pretty clear with the damage in my spine. I've been having eyesight issues this weekend too, having just got over a cold, and my left eye is not seeing very clearly. I have my first meeting with my MS Nurse on Thursday and I go to Addenbrookes on Friday as my neurologist who diagnosed me is based there, so mentioned Lemtrada as an option. Thing is, Im struggling with it all. I suffer anxiety (health based - woop!) and am terrified. I'm terrified of getting worse. I'm terrified of drugs (in all forms - I have a couple of phobias of their side effects). But I'm terrified of having the wrong drugs and ending up with PML or cancer (I watched my dad die of cancer and it scares me). I've been referred back to my local mental health place to deal with my panic but that isnt going to help me this week. Can anyone help with giving me an idea what is going to happen at these appointments, and if you have any soothing words of wisdom.
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@Stumbler
@Stumbler
 

Hi @melanie_turner . This is all new to you, so "shell shocked" is the right term, So, you need to sit down and breath, as it will take some time to come to terms with this. Then, you'll see it may explain all manner of unexplained medical problems that you may have had. You're doing the right thing in finding out about MS. It isn't life threatening and is now a manageable condition. You should try not to worry about horror stories about PML, etc.. Life itself is full of risks, which are avoided by being careful and being observant. Your meeting with your MS Nurse is an introductory meeting, to get to know one another and to discuss potential treatments and the way ahead. Your Neuro will then want to put plans in place for your treatment choice. Make a note of any questions and concerns you have, so that you don't forget to mention them. :wink:

@jessvf14
@jessvf14
 

Hi Melanie, try not to worry. Your neuro will be lovely and go through everything with you, all your previous symptoms, what your thoughts and feeings are and your treatment options. I know stumbler said don't worry about PML but it's easier said than done when you've had what most consider mild symptoms (I'm the same and mainly spinal involvement) and I read every leaflet for every drug before I take it. I am very much the start mild and work my way up if I need to kind of person with drugs. I spent months making a list of all the pros and cons of each treatment so I was ready for my appointment, and went for copaxone because it had the fewest side effects. Okay others maybe are more effective in the long term but everyone is different and this may suit me just fine. I also couldn't afford any side effects with having to run around after a toddler and in my career as people could be at risk. And i struggled with "why take the risk of PML when MS won't kill me" but I'm lucky to be at that stage. My neuro went over it all with me and luckily I was only eligible for interferons or copaxone in our trust so got my first choice. It's really difficult but talk through everything and they will give you time to think and weigh it all up if you need it. I always recommend seeing if there are any local groups you can attend. I have a local drink in run by the MS society which was daunting but gave me the chance to talk about treatments and symptoms with people who have actually been there. I also met some really positive people and have kept in touch with them x